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Advanced Cell Technology assembled a board of outside ethicists to weigh the moral implications of therapeutic cloning research, which aims to generate replacement tissues to treat a range of diseases. Here are the five major questions the board considered before the company went forward with cloning the first human embryo.

What is the moral status of the organisms created by cloning?

If a cloned organism were implanted into a womb, as was done in the case of Dolly the sheep, it could possibly go on to full development and birth. Because of this potential, some would argue that the organism produced in human therapeutic cloning experiments is the equivalent of any ordinary human embryo and merits the same degree of respect and protection.

Most members of our advisory board did not agree. We pointed out that, unlike an embryo, a cloned organism is not the result of fertilization of an egg by a sperm. It is a new type of biological entity never before seen in nature. Although it possesses some potential for developing into a full human being, this capacity is very limited. At the blastocyst stage, when the organism is typically disaggregated to create an embryonic stem cell line, it is a ball of cells no bigger than the period at the end of this sentence. (Embryos normally do not attach to the wall of the uterus and begin development until after the blastocyst stage.) It has no organs, it cannot possibly think or feel, and it has none of the attributes thought of as human. Although board members understood that some people would liken this organism to an embryo, we preferred the term "activated egg," and we concluded that its characteristics did not preclude its use in work that might save the lives of children and adults.

Is it permissible to create such a developing human entity only to destroy it??

Those who believe that human life begins at conceptionand who also regard activated eggs as morally equivalent to human embryoscannot ethically approve therapeutic cloning research. For them, such research is equivalent to killing a living child in order to harvest its organs for the benefit of others. Some of those who think this way, however, might nonetheless find acceptable research on human stem cells derived from embryos left over from in vitro fertilization (IVF) procedures. They reason, rightly or wrongly, that these embryos are certain to be destroyed and that at least some good might result from using the cells. But therapeutic cloning remains totally unacceptable to such people because it involves the deliberate creation of what they deem to be a human being in order to destroy it.

Many who do not accord moral status to the entities produced by therapeutic cloning disagree with that view. Like our board members, they argue that the benefits of this research and the possible therapies it could produce far outweigh the claims of the activated eggs. Remarkably, some who share this moral view nonetheless oppose the research on symbolic grounds. They maintain that it is unseemly to create human life in any form only to destroy it. They worry that it might start society down a slippery slope that could lead to the scavenging of organs from adults without their consent.

These symbolic and "slippery slope" arguments often have powerful emotional force, but they are hard to assess. Is it really true that using activated eggs for lifesaving therapies will lead to these imagined abuses? On the contrary, if medical science can increase peoples chances of healthy survival, might not this research even enhance respect for human life? Members of the board took note of the fact that the U.K., until very recently, has legally permitted the deliberate creation and destruction of human embryos in research since the early 1990s [see Cloning and the Law]. There has been no apparent ill effect of this permission on British society. In the end, the symbolic and slippery slope arguments did not persuade board members that therapeutic cloning research should not go forward.

Is it right to seek human eggs for scientific research?

The need to obtain a supply of human eggs leads to one of the most sensitive ethical issues cloning research. In each of her monthly cycles, a woman usually produces only one or two mature eggs. To increase that to a number that can be used in research, she must be given stimulatory medications such as those used in reproductive IVF procedures. In rare cases, these drugs can provoke a so-called hyperstimulation syndrome that can lead to liver damage, kidney failure or stroke. According to some studies, ovulation-stimulating drugs have also been associated with a heightened risk for ovarian cancer. The surgery to retrieve the eggs also carries risks, such as the dangers of general anesthesia and bleeding. Is it ethical to subject a woman to these risks for research purposes? If women are offered payment to undergo these risks, might that cause human reproductive material to become viewed as a commodity that can be commercialized? We do not permit the sale of human organs or babies. Are eggs any different?

In responding to these concerns, members of the board took note of two facts. First, a substantial market in human eggs for reproductive purposes already exists. Young women are being paid substantial sums to provide eggs that can help single women or couples have children. If women can undergo risks for this purpose, we asked, why should they not be allowed to undertake the same risks to further medical research that could save human lives? And if they can be paid for the time and discomfort that egg donation for reproductive purposes involves, why cant they receive reasonable payment for ovulation induction for research purposes?

Second, we noted that research volunteers often accept significant risks to advance medical knowledge. If a person can agree to undergo a dangerous malaria vaccine study to help cure disease, why should they be prevented from donating eggs for similar lifesaving research?

In the end, we concluded that it would be unduly paternalistic to prohibit women from donating eggs for this research. At the same time, we established a rigorous informed-consent procedure so that egg donors would be made fully aware of the possible dangers. We insisted that ovulation-stimulating medications be administered at safe dosages. And we set payment for participation at a modest level: $4,000 (about $40 an hour), which is roughly the average paid in New England for egg donation for reproductive purposes. We wanted to prevent payment from becoming an undue influence that could blind women to the risks.

What are the ethical issues relating to the person whose cells are being cloned?

It may seem that individuals who provide the cells (usually skin fibroblasts) that are fused with enucleated eggs in therapeutic cloning research face no risk apart from the remote possibility of an infection at the site of the skin biopsy. But cloning is a controversial issue that exposes all research participants to novel risks. Cell donors, for example, might find themselves at the center of a media storm if they are identified as having allowed themselves to be cloned. To prevent this, the ethics advisory board insisted on procedures ensuring strict confidentiality for both egg and cell donors (unless they choose to come forward).

One question that occupied much of our time was whether children could donate cells for this research. We concluded that in general this is not advisable, because on reaching maturity the child may feel morally compromised by having been made to contribute to a cloning procedure. We made an exception, however, in the case of an infant with a fatal genetic disease. We knew that a stem cell line based on the childs DNA might be a powerful tool in research aimed at curing the disease. Although the child would probably not survive long enough to benefit from this research, we concluded that the parents had a right to make this decision on the childs behalf. This childs cells have not yet been used in a cloning procedure.

Will therapeutic cloning facilitate reproductive cloning, the birth of a cloned baby?

A final major question raised by this research is whether it will hasten the day when people undertake human reproductive cloning. This concern presumes that reproductive cloning is and always will be ethically wrong. Many who hold this view cite the incidence of deaths and birth defects in cloned animals. Others worry about more remote dangers. They point to possible psychological risks to children produced in families in which a parent may also be a childs genetic twin. They fear that cloned children may face unrealistic expectations to live up to the achievements of their genetic predecessor. And they worry about possible social risks of cloning if societies decide to replicate a limited number of desired genomes on a large scale for military or other purposes. In opposition to this, some people hail the prospect of cloning. They see it as a new way to provide biologically related offspring for some infertile couples or as a means of reducing the risks of some inherited genetic diseases.

Whatever one thinks about the ethics of reproductive cloning, placing a ban on therapeutic cloning will not make reproductive cloning less likely. Although therapeutic cloning could help scientists perfect techniques for reproductive cloning, it could also make much clearer the dangers of trying to produce a human being in this way. There is already evidence that some cloned animals can experience improper gene expression and disruptions in imprinting, the normal pattern of silencing genes not needed in particular tissues. Such problems could discourage prospective parents from using this technology to have a baby. Thus, therapeutic cloning research could actually reduce the likelihood that cloning would be seen as a viable reproductive option.

A ban on therapeutic cloning also would not prevent unsupervised researchers from going ahead with reproductive cloning efforts on their own [see Reproductive Cloning: They Want to Make a Baby]. Groups such as the Ralians, a religous cult, or renegade scientists such as Richard G. Seed, a physicist based in Riverside, Ill., who has also been involved in embryology, have announced their intent to clone a human being and presumably will try to do so regardless of whether therapeutic cloning research is banned. A ban on therapeutic cloning will block useful research while allowing less responsible people to try reproductive cloning wherever they can find a permissive legal environment. By shutting down responsible research on the cell biology of human cloning, such a ban would also guarantee that the first efforts at cloning a human being would be based on scanty scientific information.

Our ethics board has had to wrestle with new and challenging questions, but we believe we have managed to give Advanced Cell Technology a firm ethical base for its therapeutic cloning research program. After researchers derive stem cells from cloned human activated eggs, ethicists will need to determine at what point it will be safe to try to transplant such cells back into volunteer donors. The tasks ahead for ethics boards like ours are demanding. The reward is assisting at the cutting edge of medical knowledge.
RONALD M. GREEN is director of the Ethics Institute at Dartmouth College and chair of the ethics advisory board of Advanced Cell Technology in Worcester, Mass.
Other current board members are Judith Bernstein of Boston University ; Susan Crockin, a health care lawyer in private practice in Newton, Mass.; Kenneth Goodman, director of the Forum for Bioethics at the University of Miami; Robert Kaufmann of the Southeastern Fertility Center in Mount Pleasant, S.C.; Susan R. Levin, a counselor in private practice in West Roxbury, Mass.; Susan L. Moss of San Diego State University; and Carol Tauer of the Minnesota Center for Health Care Ethics. Michael D. West, president and CEO of Advanced Cell Technology, is an ex officio member of the ethics advisory board.

Back to The First Human Cloned Embryo

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Advanced Cell Technology assembled a board of outside ethicists to weigh the moral implications of therapeutic cloning research, which aims to generate replacement tissues to treat a range of diseases. Here are the five major questions the board considered before the company went forward with cloning the first human embryo.

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Individual Rights in a Pandemic

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We, the people. But individual rights. The common good. But don't tread on me. Form a more perfect union and promote the general welfare. But secure the blessings of liberty to ourselves and our posterity.

From the moment the American republic was born right up until today, this has been its hallmark: Me and we - different flavors of freedom that compete but overlap - living together, but often at odds.

The history of the United States and the colonies that formed it has been a 413-year balancing act across an assortment of topics, priorities, passions and ambitions. Now, in the coronavirus era, that tug of war - is it about individuals, or the communities to which they belong? - is showing itself in fresh, high-stakes ways.

On Friday, protesters massed at the foot of the Pennsylvania Capitol steps - most of them maskless - for the second time in a month to decry Gov. Tom Wolf and demand he "reopen" the state faster. It is one of many states where a vocal minority has criticized virus-related shutdowns for trampling individual rights.

"He who is brave is free," read a sign carried by one Pennsylvania protester. "Selfish and proud," said another, referring to the governor's statement that politicians advocating immediate reopening were "selfish." "My body my choice," said a sign at a rally in Texas, coopting an abortion-rights slogan to oppose mandatory mask rules.

"The pandemic is presenting this classic individual liberty-common good equation. And the ethos of different parts of the country about this is very, very different. And it's pulling the country in all these different directions," says Colin Woodard, author of "American Character: A History of the Epic Struggle Between Individual Liberty and the Common Good."

Though polls show a majority of Americans still support some level of shutdown, the cries to reopen have grown in the past few weeks as job losses continue to mount. In Pennsylvania and across the country, the demonstrators' chorus has generally been: Don't tell me how to live my life when I need to get out of my house and preserve my livelihood.

"They're being told to stay home, wait it out. And that's a really weird democratic message to get. And the only way to do it is to say, 'I trust the government,'" says Elspeth Wilson, an assistant professor of government at Franklin & Marshall College in Pennsylvania.

While the catalyst is an unprecedented pandemic, the collision of individual rights and the common good is as old as the republic itself: Where does one American's right to move around in public without a mask end, and another American's right to not be infected with a potentially fatal virus begin?

"This is economic paralysis by analysis for some people. And they're afraid," says Steven Benko, an ethicist at Meredith College in North Carolina. "They feel devalued."

Americans have long romanticized those who reject the system and take matters into their own hands - the outlaw, the cowboy, the rebel. Many American leaders have wrestled to reconcile that with "common good" principles that are generally needed to govern.

"Reagan did that better than anyone. He was the cowboy selling the shared American vision. That's quite a contradiction," Benko says.

Ronald Reagan's crowning metaphor - the United States as the "city upon a hill" - was borrowed from the Puritans, whose traditions shaped the American ethos, including the compact that created the New World's first English government. But Puritanism also asserted that hard work, a form of moral righteousness, heralded success and salvation.

Over time, and with other ingredients added as more groups came to American shores, a vague sense of shame became attached to the inability to be an individualist: If you couldn't get along on your own, in the eyes of some, you were less of an American.

But is that kind of "rugged individualism," as it came to be known, applicable in a 21st-century virus scenario where everything from food shopping to health care to package delivery requires a web of intricate, precise networks that form a common good?

Overlaid on this debate, too, is what some call an ignored truth: Individualism tends to favor groups that are in power, economically or socially. In short, doing what one wants is a lot easier when you have the means (health care, money, privilege) to deal with the impact it causes.

That's particularly relevant when the direct impact of one's individualism - in the form of virus-laden droplets - can ripple out to others.

"We fail to recognize how interdependent we really are," says Lenette Azzi-Lessing, a clinical professor of social work at Boston University who studies economic disparity.

"The pandemic and dealing with it successfully does require cooperation. It also requires shared sacrifice. And that's a very bitter pill for many Americans to swallow," she says. "The pandemic is revealing that our fates are intertwined, that the person in front of us in line on the grocery store, if he or she doesn't have access to good health care, that that's going to have an effect on our health."

U.S. history has sometimes revealed that in times of upheaval - the Great Depression, World War II, even the founding of the nation itself - common good becomes a dominant American gene for a time. Will that happen here? Or is the fragmentation of politics and economics and social media too powerful to allow that?

"The status quo is individualism. And then when we get to these crisis periods, it changes," says Anthony DiMaggio, a political scientist at Lehigh University who is researching groups that advocate reopening. "All these rules go out the window and people are willing to jettison all these ways of looking at the world."

So is it, as Ayn Rand once told an interviewer, that "each man must live as an end in himself, and follow his own rational self-interest?" Or is it more like Woody Guthrie, paraphrasing Tom Joad in "The Grapes of Wrath": "Everybody might be just one big soul - well, it looks that way to me."

More likely, in a nation stitched together by a high-wire act of political compromise, it's somewhere in between - a new path that Americans must chart so they can continue their four-century experiment through unprecedented times. Yet again.
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Me and we: Individual rights, common good and coronavirus

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We, the people. But individual rights. The common good. But don't tread on me. Form a more perfect union and promote the general welfare. But secure the blessings of liberty to ourselves and our posterity.

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How To Talk about Freedom During the Pandemic

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How To Talk about Freedom During the Pandemic

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One of the most important reformers was George Buchanan, the chief medical officer for England from 1879 to 1892. He argued that cities and towns had the authority to take necessary steps to ensure the communal "sanitary welfare." He and other reformers based their arguments on an idea developed by the 19th-century English philosopher John Stuart Mill, who is, ironically, remembered largely as a staunch defender of individual liberty. Mill articulated what he called the "harm principle," which asserts that while individual liberty is sacrosanct, it should be limited when it will harm others: "The sole end for which mankind are warranted, individually or collectively, in interfering with the liberty and action of any of their number, is self-protection," Mill wrote in On Liberty in 1859. Public-health reformers argued that the harm principle gave them the authority to pursue their aims.

An essay published in The Lancet in 1883 sums up this view nicely: "We cannot see that there is any undue violation of personal liberty in the sanitary authority acting for the whole community, requiring to be informed of the existence of diseases dangerous to others. A man's liberty is not to involve risk to others," the author wrote. "A man with smallpox has the natural liberty to travel in a cab or an omnibus; but society has a right that overrides his natural liberty, and says he shall not."

Backed up by these arguments, as well as the new science of microbes, the reformers carried the day. From the 1860s to the 1890s, the English government, as well as many English cities and counties, used this interpretation of freedom to pass a series of laws allowing authorities to track and report infectious diseases, isolate and hospitalize people who were sick with these diseases, and inspect and disinfect people's homes and other buildings to ensure they were sanitary. Partly because of these interventions, rates of many infectious diseases in England dropped.

Today, however, American public-health leaders and politicians are for the most part ignoring this approach; instead, they have built their argument on numbers, and particularly on the continued rise in COVID-19 cases and deaths. This is certainly a plausible, and rational, response. But for some, the call to protect individual liberty, and to kick-start the economy in the process, is more compelling than data and statistics.

State by state, people are being asked to make a false choice between a rapid economic recovery and protecting the lives of vulnerable Americans. In a country where the idea of freedom is cherished so deeply, a compelling argument can and should be made that curtailing personal liberties is sometimes necessary to secure freedom for everyone.

Within the space of a few months, COVID-19 has joined diseases like scarlet fever, diphtheria, and cholera as a quintessential example of a threat that requires giving up one sort of liberty in order for people everywhere to enjoy their right to be healthy. Contagious and lethal, it so far cannot be cured or vaccinated against. Those who want to ignore social distancing, spurn masks, and crowd together in malls and on beaches might be making a statement in defense of personal liberty, but they are also undeniably endangering the freedoms of thousands of others.

Freedom, after all, is a flexible concept, and Americans' freedoms surely include the opportunity to minimize the collective risk of random viral death.

We want to hear what you think about this article. Submit a letter to the editor or write to letters@theatlantic.com.

Graham Mooney is an associate professor at the Johns Hopkins University School of Medicine. He studies the history of public health in the 19th and 20th centuries.

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How to Talk About Freedom During a Pandemic

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One of the most important reformers was George Buchanan, the chief medical officer for England from 1879 to 1892. He argued that cities and towns had the authority to take necessary steps to ensure the communal "sanitary welfare."

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On March 11, 2020, the World Health Organization (WHO) declared that an outbreak of the viral disease COVID-19 - first identified in December 2019 in Wuhan, China - had reached the level of a global pandemic. Citing concerns with "the alarming levels of spread and severity," the WHO called for governments to take urgent and aggressive action to stop the spread of the virus.

International human rights law guarantees everyone the right to the highest attainable standard of health and obligates governments to take steps to prevent threats to public health and to provide medical care to those who need it. Human rights law also recognizes that in the context of serious public health threats and public emergencies threatening the life of the nation, restrictions on some rights can be justified when they have a legal basis, are strictly necessary, based on scientific evidence and neither arbitrary nor discriminatory in application, of limited duration, respectful of human dignity, subject to review, and proportionate to achieve the objective.

The scale and severity of the COVID-19 pandemic clearly rises to the level of a public health threat that could justify restrictions on certain rights, such as those that result from the imposition of quarantine or isolation limiting freedom of movement. At the same time, careful attention to human rights such as non-discrimination and human rights principles such as transparency and respect for human dignity can foster an effective response amidst the turmoil and disruption that inevitably results in times of crisis and limit the harms that can come from the imposition of overly broad measures that do not meet the above criteria.

This document provides an overview of human rights concerns posed by the coronavirus outbreak, drawing on examples of government responses to date, and recommends ways governments and other actors can respect human rights in their response.

Contents
Applicable International Standards Human Rights Concerns Protect freedom of expression and ensure access to critical information Ensure quarantines, lockdowns, and travel bans comply with rights norms Protect people in custody and in institutions Ensure protection of health workers Fulfill the right to education-even if schools are temporarily closed Address disproportionate impacts on women and girls Root out discrimination and stigma, protect patient confidentiality Ensure marginalized populations can access health care without discrimination Protect community and civil society organizations Promote the rights to water and sanitation Ensure humanitarian aid continues Target economic relief to assist low-wage workers What is Human Rights Watch doing?
COVID-19 is an infectious disease caused by a new coronavirus first identified in December 2019. Coronaviruses are a family of viruses known to cause respiratory infections. There is no vaccine yet to prevent COVID-19, and no specific treatment for it, other than managing the symptoms.

By mid-March 2020, more than 150 countries had reported cases of COVID-19, and the WHO reported there were more than 200,000 cases worldwide. More than 7,000 people had died and the numbers were continuing to rise at an alarming rate.

Under the International Covenant on Economic, Social and Cultural Rights, which most countries have adopted, everyone has the right to "the highest attainable standard of physical and mental health." Governments are obligated to take effective steps for the "prevention, treatment and control of epidemic, endemic, occupational and other diseases."

The United Nations Committee on Economic, Social and Cultural Rights, which monitors state compliance with the covenant, has stated that:

The right to health is closely related to and dependent upon the realization of other human rights, as contained in the International Bill of Rights, including the rights to food, housing, work, education, human dignity, life, non-discrimination, equality, the prohibition against torture, privacy, access to information, and the freedoms of association, assembly and movement. These and other rights and freedoms address integral components of the right to health.

The right to health provides that health facilities, goods, and services should be:

available in sufficient quantity,

accessible to everyone without discrimination, and affordable for all, even marginalized groups;

acceptable, meaning respectful of medical ethics and culturally appropriate; and

scientifically and medically appropriate and of good quality.

On March 16, 2020, a group of UN human rights experts said that "emergency declarations based on the COVID-19 outbreak should not be used as a basis to target particular groups, minorities, or individuals. It should not function as a cover for repressive action under the guise of protecting health... and should not be used simply to quash dissent."

The Siracusa Principles speciﬁcally state that restrictions should, at a minimum, be:

provided for and carried out in accordance with the law;

directed toward a legitimate objective of general interest;

strictly necessary in a democratic society to achieve the objective;

the least intrusive and restrictive available to reach the objective;

based on scientiﬁc evidence and neither arbitrary nor discriminatory in application; and

of limited duration, respectful of human dignity, and subject to review.

Human Rights Concerns

Protect freedom of expression and ensure access to critical information

Under international human rights law, governments have an obligation to protect the right to freedom of expression, including the right to seek, receive, and impart information of all kinds, regardless of frontiers. Permissible restrictions on freedom of expression for reasons of public health, noted above, may not put in jeopardy the right itself.

Governments are responsible for providing information necessary for the protection and promotion of rights, including the right to health. The Committee on Economic, Social and Cultural Rights regards as a "core obligation" providing "education and access to information concerning the main health problems in the community, including methods of preventing and controlling them." A rights-respecting response to COVID-19 needs to ensure that accurate and up-to-date information about the virus, access to services, service disruptions, and other aspects of the response to the outbreak is readily available and accessible to all.

In a number of countries, governments have failed to uphold the right to freedom of expression, taking actions against journalists and healthcare workers. This ultimately limited effective communication about the onset of the disease and undermined trust in government actions:

China's government initially withheld basic information about the coronavirus from the public, underreported cases of infection, downplayed the severity of the infection, and dismissed the likelihood of transmission between humans. Authorities detained people for reporting on the epidemic on social media and internet users for "rumor-mongering," censored online discussions of the epidemic, and curbed media reporting. In early January, Li Wenliang, a doctor at a hospital in Wuhan where infected patients were being treated, was summoned by police for "spreading rumors" after he warned of the new virus in an online chatroom. He died in early February from the virus.

In Iran, the outbreak emerged after authorities had severely damaged public trust by brutally repressing widespread anti-government protests and lying about shooting down a civilian airliner. As a result, Iranian authorities have struggled to assure the public that government decision-making around the COVID-19 outbreak has been in the public's best interests. The unusually high rate of reported cases of government officials contracting the virus, as well as the inconsistency in figures announced by officials and domestic media sources, have heightened concerns that the data is either being deliberately underreported or poorly collected and analyzed.

In Thailand, whistleblowers in the public health sector and online journalists have faced retaliatory lawsuits and intimidation from authorities after they criticized government responses to the outbreak, raised concerns about a possible cover-up, and reported alleged corruption related to the hoarding and profiteering of surgical masks and other supplies. Some medical personnel were also threatened with disciplinary action - including termination of employment contracts and revocation of their licenses - for speaking out about the severe shortage of essential supplies in hospitals across the country.

A few countries prioritized open communication and transparent reporting on the number of cases:

Taiwan took swift steps to combat the virus, including promptly making credible information widely available to the public. Daily press briefings by health officials and public service announcements aim to counter misinformation and have helped to calm panic, restore public confidence, and encourage people's assistance in the crisis.

Singapore's government published and regularly updated detailed statistics on the number and rate of infections and recoveries.

South Korea's government also published health data and health officials gave two daily briefings to establish public confidence and promote citizen vigilance.

In Italy, inconsistent messages from public officials, including for domestic political reasons, may initially have diluted the impact of public service announcements about proper hygiene and social distancing. The government has held daily news conferences to share data and implemented an aggressive public campaign about better practices to protect oneself and others from spreading the virus.
Recommendations:
Governments should fully respect the rights to freedom of expression and access to information, and only restrict them as international standards permit.

Governments should ensure that the information they provide to the public regarding COVID-19 is accurate, timely, and consistent with human rights principles. This is important for addressing false and misleading information.

All information about COVID-19 should be accessible and available in multiple languages, including for those with low or no literacy. This should include qualified sign language interpretation for televised announcements, as Taiwan has done; websites that are accessible to people with vision, hearing, learning, and other disabilities; and telephone-based services that have text capabilities for people who are deaf or hard of hearing. Communications should utilize plain language to maximize understanding. Age appropriate information should be provided to children to help them take steps to protect themselves.

Health data is particularly sensitive, and the publication of information online can pose a significant risk to affected persons and in particular people who are already in positions of vulnerability or marginalization in society. Rights-based legal safeguards should govern the appropriate use and handling of personal health data.

Reliable and unfettered access to the internet should be maintained and steps should be taken to ensure internet access be available to people with low incomes. The US Federal Communications Commission's " Keep Americans Connected " pledge commits participating companies not to terminate service to customers who are unable to pay their bills due to the disruptions caused by the coronavirus pandemic, to waive any late fees, and to open Wi-Fi hotspots to any American who needs them. Further steps could be taken to lift data caps, upgrade speeds, and eliminate eligibility requirements for any low-income targeted plans during the pandemic.

Ensure quarantines, lockdowns, and travel bans comply with rights norms

International human rights law, notably the International Covenant on Civil and Political Rights (ICCPR), requires that restrictions on rights for reasons of public health or national emergency be lawful, necessary, and proportionate. Restrictions such as mandatory quarantine or isolation of symptomatic people must, at a minimum, be carried out in accordance with the law. They must be strictly necessary to achieve a legitimate objective, based on scientific evidence, proportionate to achieve that objective, neither arbitrary nor discriminatory in application, of limited duration, respectful of human dignity, and subject to review.

Broad quarantines and lockdowns of indeterminate length rarely meet these criteria and are often imposed precipitously, without ensuring the protection of those under quarantine - especially at-risk populations. Because such quarantines and lockdowns are difficult to impose and enforce uniformly, they are often arbitrary or discriminatory in application.

Freedom of movement under international human rights law protects, in principle, the right of everyone to leave any country, to enter their own country of nationality, and the right of everyone lawfully in a country to move freely in the whole territory of the country. Restrictions on these rights can only be imposed when lawful, for a legitimate purpose, and when the restrictions are proportionate, including in considering their impact. Travel bans and restrictions on freedom of movement may not be discriminatory nor have the effect of denying people the right to seek asylum or of violating the absolute ban on being returned to where they face persecution or torture.

Governments have broad authority under international law to ban visitors and migrants from other countries. However, domestic and international travel bans historically have often had limited effectiveness in preventing transmission, and may in fact accelerate disease spread if people flee from quarantine zones prior to their imposition.

In China, the government imposed an overly broad quarantine with little respect for rights:

In mid-January, authorities in China quarantined close to 60 million people in two days in an effort to limit transmission from the city of Wuhan in Hubei province, where the virus was first reported, even though by the time the quarantine started, 5 million of Wuhan's 11 million residents had left the city. Many residents in cities under quarantine expressed difficulties obtaining medical care and other life necessities, and chilling stories have emerged of deaths and illnesses: A boy with cerebral palsy died because no one took care of him after his father was taken to be quarantined. A woman with leukemia died after being turned away by several hospitals because of concerns about cross-infection. A mother desperately pleaded to the police to let her daughter with leukemia through a checkpoint at a bridge to get chemotherapy. A man with kidney disease jumped to his death from his apartment balcony after he couldn't get access to health facilities for dialysis. Authorities have also reportedly used various intrusive containment measures: barricading shut the doors of suspected infected families with metal poles, arresting people for refusing to wear masks, and flying drones with loudspeakers to scold people who went outside without masks. The authorities did little to combat discrimination against people from Wuhan or Hubei province who traveled elsewhere in China.

In Italy the government has imposed a lockdown but with greater protections for individual rights. The Italian government adopted progressively restrictive measures since the first major outbreak of COVID-19 cases in the country in late February. Authorities initially placed ten towns in Lombardy and one in Veneto under strict quarantine, prohibiting residents from leaving the areas. At the same time, they closed schools in affected regions. Citing a surge in cases and an increasingly unsustainable burden on the public healthcare system, the government on March 8 imposed a slew of new measures on much of the country's north that put in place much more severe restrictions on movement and basic freedoms. The next day, the measures were applied across the country. Further measures imposed included restrictions on travel except for essential work or health reasons (upon self-certification), closure of all cultural centers (cinemas, museums), and cancellation of sports events and public gatherings. On March 11 the government closed all bars, restaurants, and stores except food markets and pharmacies (and a few other exceptions) across the country. People who disobey the travel restrictions without a valid reason can be fined up to 206 euros and face a three-month prison term. All schools and universities were closed throughout the country. People have been allowed out to shop for essential items, exercise, work (if unable to perform work from home), and for health reasons (including care for a sick relative).

Other governments, such as those in South Korea, Hong Kong, Taiwan, and Singapore have responded to the outbreak without enacting sweeping restrictions on personal liberty, but have reduced the number of travelers from other countries with significant outbreaks. In South Korea, the government adopted proactive and ramped-up testing for COVID-19. It focused on identifying infection hotspots, conducting a large number of tests on at-risk people without charge, disinfecting streets in areas with high numbers of infections, setting up drive-through testing centers, and promoting social distancing. In Hong Kong, there have been concerted efforts to promote social distancing, handwashing, and mask-wearing. Taiwan proactively identified patients who sought health care for symptoms of respiratory illness and had some tested for COVID-19. It also set up a system that alerts the authorities based on travel history and symptoms during clinical visits to aid in case identification and monitoring. Singapore adopted a contact-tracing program for those confirmed to have the virus, among other measures. However, the government's decision to deport four foreign workers for violating a mandatory 14-day leave of absence from work and ban them from working in the country raises concern of disproportionate penalties.
Recommendations:
Governments should avoid sweeping and overly broad restrictions on movement and personal liberty, and only move towards mandatory restrictions when scientifically warranted and necessary and when mechanisms for support of those affected can be ensured. A letter from more than 800 public health and legal experts in the US stated, " Voluntary self-isolation measures [combined with education, widespread screening, and universal access to treatment] are more likely to induce cooperation and protect public trust than coercive measures and are more likely to prevent attempts to avoid contact with the healthcare system."

When quarantines or lockdowns are imposed, governments are obligated to ensure access to food, water, health care, and care-giving support. Many older people and people with disabilities rely on uninterrupted home and community services and support. Ensuring continuity of these services and operations means that public agencies, community organizations, health care providers, and other essential service providers are able to continue performing essential functions to meet the needs of older people and people with disabilities. Government strategies should minimize disruption in services and develop contingent sources of comparable services. Disruption of community-based services can result in the institutionalization of persons with disabilities and older people, which can lead to negative health outcomes, including death, as discussed below.

Protect people in custody and in institutions

COVID-19, like other infectious diseases, poses a higher risk to populations that live in close proximity to each other. And it disproportionately affects older people and individuals with underlying illnesses such as cardiovascular disease, diabetes, chronic respiratory disease, and hypertension. Eighty percent of the people who have died of COVID-19 in China were over the age of 60.

This risk is particularly acute in places of detention, such as prisons, jails, and immigration detention centers, as well as residential institutions for people with disabilities and nursing facilities for older people, where the virus can spread rapidly, especially if access to health care is already poor. States have an obligation to ensure medical care for those in their custody at least equivalent to that available to the general population, and must not deny detainees, including asylum seekers or undocumented migrants, equal access to preventive, curative or palliative health care. Asylum seekers, refugees living in camps, and people experiencing homelessness may also be at increased risk because of their lack of access to adequate water and hygiene facilities.

In nursing facilities and other settings with large numbers of older people, visitor policies should balance the protection of older and at-risk residents with their need for family and connection. The US Department of Veterans Affairs announced a "no visitors" policy at its 134 nursing homes around the country in response to the risk of COVID-19. While the risk to older people is serious, blanket policies do not take into account public health guidance or the needs of older people.

People in prisons, jails, and immigration detention centers frequently do not receive adequate health care under normal circumstances, even in economically developed countries. Severely substandard health care has contributed to recent deaths of immigrants in the custody of US Immigration and Customs Enforcement. Populations in custody often include older people and people with serious chronic health conditions, meaning they are at greater risk for illness from COVID-19.

Many people in US jails have not been convicted of a crime but are locked up simply because they cannot afford to pay the bail set in their case. Older men and women are the fastest growing group in US prisons due to lengthy sentences, and prison officials already have difficulty providing them appropriate medical care. As a response, in one county in the US state of Ohio, the courts expedited review of people in jail, releasing some and transferring others to prisons. The American Civil Liberties Union has filed a lawsuit that seeks to challenge ongoing immigrant detention in the context of the virus.

Prisoners in Iran have reportedly tested positive for the coronavirus, including in Evin prison in Tehran and in the cities of Euromieh and Rasht. In an open letter in February, families of 25 prisoners detained for peaceful activism sought their at least temporary release amid the outbreak and lack of sufficient prison medical care. In March, the Iranian judiciary reportedly temporarily released about 85,000 prisoners for the Persian New Year (Nowruz), a substantially greater number than normal for the holiday, apparently because of health concerns surrounding the coronavirus outbreak. However, dozens of human rights defenders and others held on vaguely defined national security crimes remained in prison.

On March 12, Bahrain's King Hamad bin Isa Al-Khalifa reportedly pardoned 901 detainees "for humanitarian reasons, in the backdrop of the current circumstances," likely in reference to the coronavirus outbreak. The Ministry of Interior announced that another 585 detainees would be released and granted non-custodial sentences.

In Italy, prisoners in over 40 prisons have protested over fears of contagion in overcrowded facilities and against bans on family visits and supervised release during the coronavirus pandemic. In response, authorities have authorized for the first time the use of email and Skype for contact between prisoners and their families and for educational purposes and announced a plan to release and place under house arrest prisoners with less than 18 months on their sentence. The main prisoner rights organization in Italy, Antigone, estimated this could benefit at most 3,000 prisoners, while the penitentiary system is at around 14,000 over capacity. The organization called for broader measures to ensure the release of a greater number of detainees, including in particular older detainees and those with at-risk health profiles, among other measures. Civil society organizations have also called for alternatives to detention for all people currently detained in immigration detention centers in Italy due to the increased risk of infection and no prospect for deportation.
Recommendations:
Government agencies with authority over people housed in prisons, jails, and immigration detention centers should consider reducing their populations through appropriate supervised or early release of low-risk category of detainees including for example, those whose scheduled release may be soon, those who are in pre-trial detention for non-violent and lesser offenses, or whose continued detention is similarly unnecessary or not justified. Detained individuals at high risk of suffering serious effects from the virus, such as older people and people with underlying health conditions, should also be considered for similar release with regard to whether the detention facility has the capacity to protect their health, including guaranteed access to treatment, and taking into consideration factors such as the gravity of the crime committed and time served.

If safe and legal deportations are suspended due to the virus, the legal justification for detaining people pending deportation may no longer exist. In these cases, authorities should release detainees and institute alternatives to detention.

Authorities that operate prisons, jails, and immigration detention centers should publicly disclose their plans of action to reduce the risk of coronavirus infection in their facilities and the steps they will take to contain the infection and protect prisoners, prison staff, and visitors, if cases of the virus or exposure to it are present. Persons in any form of detention have the same right to health as the non-incarcerated population and are entitled to the same standards of prevention and treatment. The detained population and the general population have a compelling interest to know in advance what plans authorities have put in place for handling COVID-19.

Authorities should take steps to ensure they are appropriately coordinating with public health departments and communicating openly with staff and people in custody. They should also screen and test for COVID-19 according to the most recent recommendations of health authorities. They should provide appropriate hygiene training and supplies and ensure that all areas susceptible to harboring the virus and accessible to prisoners, prison staff, and visitors, are disinfected regularly, consistent with accepted best practices. They should develop plans for housing people exposed to or infected with the virus. They should ensure that individuals released or put on supervised leave have access to appropriate accommodations and health care. Any plans for lockdowns or isolation should be limited in scope and duration based on the best science available, and they should not be or seem punitive, as fear of being placed in lockdowns or isolation could delay people notifying medical staff if they experience symptoms of infection. Detention centers should consider alternative strategies such as video conferencing for individuals to be able to connect with family or legal counsel.

Governments seeking to contain the spread of the virus should evaluate and modify as necessary during the time of the outbreak measures used to enforce immigration laws, including court hearings and check-ins with authorities as alternatives to detention. Authorities should provide public notice that there will be no negative repercussions for missed court dates or check-ins during the time of the outbreak. Authorities should stop arbitrary detentions of migrants, seek alternatives to detention for people currently in immigration detention, and opt for release where possible, particularly for those in high-risk categories if infected and for people who are being held with no prospect for imminent, safe, and legal deportation.

In the absence of adequate state support, the United Nations and other inter-governmental agencies should urgently press for access to formal and informal detention facilities to provide detainees with life-saving assistance.

Governments housing refugees and asylum seekers should ensure their response to COVID-19 includes prevention and treatment measures, with particular attention to measures to alleviate overcrowding in detention centers and camps, improve sanitation and access to health care, and resort to time-bound quarantines and isolation only as necessary.

Ensure protection of health workers

As part of the right to health, the ICESCR provides that governments should create conditions that "would assure to all medical service and medical attention in the event of sickness."

Governments have an obligation to minimize the risk of occupational accidents and diseases including by ensuring workers have health information and adequate protective clothing and equipment. This means providing health workers and others involved in the COVID-19 response with appropriate training in infection control and with appropriate protective gear.

Combating the spread of COVID-19 requires that health facilities have adequate water, sanitation, hygiene, healthcare waste management, and cleaning. A 2019 baseline report by WHO and the UN Children's Fund (UNICEF) found that "[a]n estimated 896 million people use health care facilities with no water service and 1.5 billion use facilities with no sanitation service."

Human Rights Watch research into hospital-acquired infections in Hungary suggests the nation's mismanaged, underfunded, and understaffed public healthcare system is poorly equipped to handle a COVID-19 outbreak. Patients and medical experts described a lack of basic hygiene protocol, lack of isolation rooms, and a shortage of health professionals, doctors and nurses, and medical supplies in general. One doctor said it was nearly impossible to get essential items like disinfectant and respirator masks, which are critical to protect against viruses.

In Venezuela, Human Rights Watch has documented a health system in utter collapse. Hospitals have closed or are operating at a fraction of their capacity, many without regular access to electricity or water. Vaccine-preventable diseases such as measles and diphtheria have returned long before the pandemic hit.

Broad sanctions imposed by the US on Iran have drastically constrained the ability of the country to finance humanitarian imports, including medicines. This has caused serious hardships for ordinary Iranians. Concerned governments should support Iran's efforts to combat the COVID-19, including by providing access to medical devices and testing kits.

In Thailand, public health capacity has been diminished by corruption. Medical personnel lack surgical masks and local supplies have been diverted and shipped to China and other markets in part due to corruption.

The Health Ministry in Egypt in February sent doctors and medical teams to a quarantine facility without informing them that their transfer was part of the COVID-19 response or of the risks entailed. Medical staff said they were " tricked " into the assignment.

In Lebanon, the spokesperson for the country's medical supply importers told Human Rights Watch that the country had run out of gloves, masks, gowns, and other supplies necessary to deal with the coronavirus outbreak due to the financial crisis that had prevented them from importing needed goods. She added that medical supply importers have brought in just US$10 million of the $120 million in goods they have sought since October and nearly all transactions have been frozen since February due to the country's ongoing economic crisis. The head of the Syndicate of Private Hospitals said that the government owes private hospitals more than $1.3 billion, compromising their ability to pay staff and purchase medical equipment. Yet the Lebanese government has not put in place any measures to address the economic crisis threatening access to medical care, medicine, and medical equipment.
Recommendations:
Governments should take measures so that health care is available to all, accessible without discrimination, affordable, respectful of medical ethics, culturally appropriate, and of good quality.

Governments should ensure that health workers have access to appropriate protective equipment and that social protection programs are in place for the families of workers who die or become ill as a result of their work, and ensure such programs include informal workers, who represent a large share of the caregiving sector.

In past epidemics, fear of exposure has led to attacks on health workers. Governments should monitor for such attacks to deter them, and ensure that they can quickly, adequately, and appropriately respond if attacks occur.

Fulfill the right to education-even if schools are temporarily closed

To ensure education systems respond adequately, UNESCO has recommended that states "adopt a variety of hi-tech, low-tech and no tech solutions to assure the continuity of learning." In many countries, teachers already use online learning platforms to complement normal contact hours in classrooms for homework, classroom exercises, and research, and many students have access to technological equipment at home. However, not all countries, communities, families, or social groups have adequate internet access, and many children live in places with frequent government-led internet shutdowns.
Recommendations:
Online learning should be used to mitigate the immediate impact of lost normal school time. Schools deploying educational technology for online learning should ensure the tools protect child rights and privacy. Governments should attempt to recover missed in-person class time once schools reopen.

Governments should adopt measures to mitigate the disproportionate effects on children who already experience barriers to education, or who are marginalized for various reasons - including girls, those with disabilities, those affected by their location, their family situation, and other inequalities. Governments should focus on adopting strategies that support all students through closures - for example, monitoring students most at risk and ensuring students receive printed or online materials on time, with particular attention provided to students with disabilities who may require adapted, accessible material.

Governments should adopt mitigation strategies, for example by working with teachers, school officials, and teachers' unions and associations to factor in plans to recover teaching or contact hours lost, adjusting school calendars and exam schedules, and ensuring fair compensation for teachers and school personnel who are working additional hours.

In countries with high numbers of out-of-school children, school closures may jeopardize efforts to increase school enrollments and retention, particularly at the secondary level. Governments should place additional measures to monitor compliance with compulsory education - and ensure government education officials monitor school returns once schools reopen. Education officials should focus attention on areas with high incidence of child labor or child marriage and ensure all children return to school. Officials should also ensure that schools with refugee students adopt outreach measures to ensure refugee children return to school, including by working with refugee parent groups and community leaders.

Sudden school closures may also leave low-income families struggling to make ends meet and provide necessities. Governments should guarantee continued meal provision during school closures for children in low-income families who will miss subsidized meals.

Address disproportionate impacts on women and girls

Outbreaks of disease often have gendered impacts. Human Rights Watch found that the 2014 Ebola virus disease outbreak and the 2015-2016 outbreak of the mosquito-borne Zika virus in Brazil had particularly harmful impacts on women and girls and reinforced longstanding gender inequity. News reports and public health analysis suggest that COVID-19 is disproportionately affecting women in a number of ways.

Though risks specific to pregnant women exposed to COVID-19 are not yet clear, the outbreak could negatively affect sexual and reproductive health and rights. Overloaded health systems, reallocation of resources, shortages of medical supplies, and disruptions of global supply chains could harm women's access to contraception and pre- and post-natal and birth care. Although the risk of infection through breastfeeding is not known, the UN Population Fund has recommended that breastfeeding mothers who become ill should not be separated from their infants. Past epidemics, such as the Ebola outbreak in Sierra Leone, have impacted the availability of routine prenatal and maternity care, leaving women more at risk to preventable maternal deaths or morbidities.

In China, press reports suggest an increase in domestic violence under quarantine. Crises - and lockdowns - can trigger greater incidence of domestic violence for reasons including increased stress, cramped and difficult living conditions, and breakdowns in community support mechanisms. Crises can often further limit women's ability to get away from abuse, and place victims in an environment without appropriate access to services, such as safe shelter away from abusers and accountability for abuse.

Women globally do almost 2.5 times as much unpaid care and domestic work as men, and they are more likely than men to face additional care giving responsibilities when schools close, making it harder to maintain paid employment. Japan responded to the potential for a disproportionate impact on families with young children by offering to offset costs to businesses for workers taking paid leave to care for children during school closures, though the amount offered was low. Italy was considering measures to mitigate the effects of the lockdown on families with children. These could include emergency paid parental leave or vouchers for families with children up to 12 years old (or children with disabilities without any age limit) who need to pay for childcare amid the prolonged school closures.

Up to 95 percent of female workers in some regions work in the informal sector where there is no job security, and no safety net if a crisis like COVID-19 destroys their earnings. Informal work includes many occupations most likely to be harmed by a quarantine, social distancing, and economic slowdown, such as street vendors, goods traders, and seasonal workers. Women are also over-represented in service industries that have been among the hardest hit by the response to COVID-19.

Worldwide, 70 percent of health and social service providers are women - meaning women are at the front lines of containing the spread of COVID-19 and may be heavily exposed to the virus through work in the health sector. Fear in communities about the exposure that health workers face may lead women in this sector to be shunned or face stigma, adding an extra burden to the challenge of trying to protect their and their families' health. This may manifest itself, for example, in trying to access or secure childcare while they work on the front lines.

Some female care workers are migrant domestic workers. They can be vulnerable to abusive employment conditions in normal times, and are at heightened risk of abuse, losing employment, being frontline caregivers without adequate protections, and of being trapped and unable to reach their homes during a crisis. They may also face barriers to protecting their own health.

Moves toward telecommuting - for school and work - as a means of social distancing can disproportionately harm women and girls. Women are up to 31 percent less likely to have internet access than men in some countries, and worldwide about 327 million fewer women than men have a smartphone. Even when women have access to the internet, gender disparities may make them less able to use it for reasons including cost, socialization, and family pressures. When multiple members of a household need access to limited computing resources within the home, gender inequality may mean women and girls have less access.
Recommendations:
Authorities should take steps to mitigate gendered impacts and ensure that responses do not perpetuate gender inequity.

When education is moved online, governments and education providers should monitor participation and retention of students in online courses for a gendered impact and respond quickly with strategies to retain and reengage women and girls if their participation falls off. They should also address the particular risks of job losses to women who may take on additional caregiving during school closures.

Measures designed to assist workers affected by the pandemic should ensure the assistance of workers in informal work and service industries, who are predominantly women.

Governments should ensure public awareness campaigns address how victims of domestic violence can access services, and should ensure that services are available to all victims of domestic violence, including those living in areas under movement restrictions or under quarantine and those infected with COVID-19.

Governments should support frontline health and social service care workers with the recognition that these workers are mostly women. Support should include consideration of their needs as caregivers within their own families and the impact of stigma on them and their families.

Both source and destination countries for migrant domestic workers should adopt special measures to locate and assist migrant domestic workers to prevent abusive labor conditions and provide assistance relating to managing COVID-19.

Governments and international bodies should closely monitor the impact of COVID-19 on pregnant women and act to mitigate the impact of the pandemic on the right of women and girls to access sexual and reproductive health services.

Root out discrimination and stigma, protect patient confidentiality

During previous public health crises, people with infection or disease and their families have often faced discrimination and stigma. For example, Human Rights Watch found that people living with HIV in Kenya, South Africa, the Philippines, and the US faced discrimination and stigma due to their HIV status and have been prevented from accessing health care, getting jobs, and attending school. Public health research has shown that survivors of Ebola in West Africa have faced harmful stigma that, in some cases, has led to eviction, loss of employment, abandonment, violence, and other consequences.

Since the coronavirus outbreak, news reports from a number of countries have documented bias, racism, xenophobia, and discrimination against people of Asian descent. Incidents include physical attacks and beatings, violent bullying in schools, angry threats, discrimination at school or in workplaces, and the use of derogatory language in news reports and on social media platforms, among others. Since January, media have reported alarming incidents of hate crimes in the United Kingdom, the US, Spain, and Italy, among other countries, targeting people of Asian descent, apparently linked to COVID-19. Senior US government officials, including President Donald Trump, have stoked anti-Chinese sentiment by referring to the coronavirus as the " Chinese Virus," and in one incident reported by a White House correspondent, the " Kung Flu." Anti-immigrant leaders like Victor Orban in Hungary and Matteo Salvini in Italy have seized on the pandemic to stoke xenophobic sentiment.

South Korean authorities believe 63 percent of the then more than 7,300 confirmed cases in the country attended services held by the Shincheonji Church of Jesus in the city of Daegu or had contact with attendees. In a statement, the church reported "4,000 cases of injustice" against congregants since the outbreak, including "termination of employment, workplace bullying, domestic persecution, labeling, and slandering," and said the church was being blamed as "the main culprit of the COVID-19 outbreak."

Reporting by the BBC in South Korea found that public health alerts around the virus may not have adequately protected the privacy of individuals with the virus.

Governments should take swift action to protect from attack individuals and communities who may be targeted as bearing responsibility for COVID-19, thoroughly investigate all reported incidents, and hold perpetrators accountable.

Governments should ensure that response measures to COVID-19 do not target or discriminate against particular religious or ethnic groups, and that responses are inclusive of and respect the rights of marginalized groups, including people with disabilities and older people. Governments should ensure equal access to emergency services to people with disabilities and older people.

Governments should work to combat stigma and discrimination by training health workers on COVID-19, using mass media and school networks to expand public awareness of human rights, and recognizing that the virus knows no boundaries and recognizes no distinctions of race, ethnicity, religion, or nationality.

Governments should ensure that patient confidentiality is protected even as authorities take steps to identify those who may have been exposed to the virus.

Ensure marginalized populations can access health care without discrimination

The UN high commissioner for human rights, Michelle Bachelet, a pediatrician by training, has said that "[t]o effectively combat the outbreak means ensuring everyone has access to treatment, and is not denied health care because they cannot pay for it or because of stigma."

In many countries, lesbian, gay, bisexual, and transgender (LGBT) people face discrimination in accessing health care. Human Rights Watch has documented health care discrimination based on sexual orientation and gender identity in countries including the US, Tanzania, Japan, Indonesia, Bangladesh, Russia, and Lebanon. This discrimination can affect access to HIV testing and treatment as well as care for other chronic diseases that can make LGBT people particularly at risk of suffering serious illness or death as a result of COVID-19.

Governments should ensure that all healthcare services related to COVID-19 are provided without stigma and discrimination of any kind, including on the grounds of sexual orientation and gender identity, and should make clear through public messaging campaigns that everyone has the right to access health care.

Governments should take steps to create firewalls between healthcare providers and undocumented migrants to reassure vulnerable populations that they do not risk reprisal or deportation if they access lifesaving care, especially in the context of seeking testing or treatment for COVID-19.

All governments have an obligation to ensure that a serious public health crisis does not also become a human rights crisis because people are unable to access adequate medical care. Governments need to take steps to ensure everyone has affordable and accessible medical care and treatment options.

Protect community and civil society organizations

In many countries, civil society organizations are doing critical work to support efforts to stem the spread of the virus and ensure that those with COVID-19 - or those living in isolation or under quarantine - have access to needed protection, care, and social services. Governments should protect and support civil society organizations doing this work, as well as those reporting on the impacts of the outbreak.

During the 2014 Ebola outbreak in West Africa, nongovernmental groups, local newspapers, and community radio played a key role in public health education.

In Hong Kong, ordinary people have organized themselves to create and distribute masks and hand sanitizers to the most vulnerable to fill policy gaps. But the Chinese government has long maintained a stranglehold on nongovernmental organizations and some groups are struggling with reduced funding during the outbreak.

In Italy, authorities have subjected nongovernment sea rescue organizations assisting migrants and asylum seekers to quarantines at dock despite crew members and passengers testing negative for the virus. In a context in which civilian rescue missions have been consistently undermined, blocked, and even criminalized, potentially unnecessary quarantines might be used to deter rescue at sea.

Governments should not exploit the coronavirus pandemic to criminalize or obstruct the work of civil society organizations.

Promote the rights to water and sanitation

The rights to water and to sanitation are part of the right to an adequate standard of living. The UN Committee on Economic, Social and Cultural Rights has reaffirmed that the rights to water and sanitation are an essential component of the right to an adequate standard of living, and "integrally related, among other Covenant rights, to the right to health."

Billions of people around the world do not have access to safe drinking water. Yet, as the WHO has noted the provision of safe water, sanitation, and hygienic conditions is essential to protecting human health during the COVID-19 outbreak. Prevention of human-to-human transmission of the COVID-19 virus may be supported by promotion of the rights to water and sanitation, and supporting water and wastewater infrastructure and technicians to ensure good and consistently applied water, sanitation, and hygiene (WASH) and waste management practices in communities, homes, schools, marketplaces, and healthcare facilities. More research is needed to understand the risk of contaminated drinking water, environmental transmission, and how to ensure wastewater operators are trained and supported throughout the crisis.

Lack of potable water and sanitation at home, school, or in healthcare settings will make preventative measures difficult. In some cases, without adequate water and sanitation these settings themselves may be a locus for the spread of the disease.

Venezuela's healthcare infrastructure is so weak that the most basic recommendation -handwashing - is difficult even for healthcare providers, who work under difficult conditions. The Venezuelan doctors and nurses Human Rights Watch interviewed over the past few months said that soap and disinfectants were virtually nonexistent in their clinics and hospitals. As inflation has risen and salaries have been devalued, it has become impossible for them to bring in their own supplies. Public hospitals in Caracas, the capital, are also suffering regular water shortages. In remote hospitals, the shortages have lasted weeks to months. Patients and personnel have been required to bring their own water for drinking and sometimes for flushing toilets.

Governments should immediately suspend any water shutoffs for failure to pay. Discontinuing water services for failure to pay in any context is incompatible with human rights and can be particularly harmful in the context of public health crises like the COVID-19 pandemic.

Ensure humanitarian aid continues

According to the United Nations, a number of the many countries affected by COVID-19 are already facing crises due to conflicts, natural disasters, or climate change. Many people in those crisis-hit countries rely on humanitarian aid to survive.

Governments should ensure that support for vital humanitarian operations carried out by the UN and other aid agencies does not suffer as a result of COVID-19.

Target economic relief to assist low-wage workers

Governments should take policy measures to buffer the economic impacts of COVID-19, which will affect lower-wage workers first and hardest. Social distancing, quarantine, and the closure of businesses may have enormous economic consequences. The most vulnerable people are low-wage workers in low-income households. Governments should create mechanisms so that workers affected by COVID-19 do not suffer loss of income that might deter them from self-isolating to contain the spread of the virus.

Public health experts recommend that companies encourage employees to work from home to prevent the virus from spreading. But remote work is not an option for millions of workers in fields like retail, restaurants, personal services, the gig economy, and informal sectors. In these fields, employment situations are more precarious, wages tend to be lower, and in some countries workers have low rates of paid sick leave. Particularly in countries such as the US, where low pay may combine with lack of access to sick leave and healthcare coverage, these workers will need assistance.

Many governments guarantee some paid sick leave to all workers. Others - most notably the US among developed economies - do not. Low-wage earners, service workers, informal workers, and workers in the gig economy are among those least likely to have paid sick leave. The lack of paid sick and family leave means disease outbreaks like COVID-19 place an undue burden on poor and marginalized workers and exacerbate economic inequality and also contribute to gender inequity. To support families during the outbreak, sick and family leave should cover self-isolation and caregiving responsibilities during school and care facility closures.

Unconditional tax cuts for employers and employee-side payroll tax cuts are often poorly targeted and may not reach those most in need. For example, expanded social insurance programs like unemployment may permit workers to stay on payroll and be paid when they cannot work because of a COVID-19 downturn.

Follow our reporting on the impacts of COVID-19 at: https://www.hrw.org/tag/coronavirus.

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Human Rights Dimensions of COVID-19 Response

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On March 11, 2020, the World Health Organization (WHO) declared that an outbreak of the viral disease COVID-19 - first identified in December 2019 in Wuhan, China - had reached the level of a global pandemic. Citing concerns with "the alarming levels of spread and severity," the WHO called for governments to take urgent and aggressive action to stop the spread of the virus.

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The millions of dots on the map trace highways, side streets and bike trails - each one following the path of an anonymous cellphone user.

One path tracks someone from a home outside Newark to a nearby Planned Parenthood, remaining there for more than an hour. Another represents a person who travels with the mayor of New York during the day and returns to Long Island at night.

Yet another leaves a house in upstate New York at 7 a.m. and travels to a middle school 14 miles away, staying until late afternoon each school day. Only one person makes that trip: Lisa Magrin, a 46-year-old math teacher. Her smartphone goes with her.

An app on the device gathered her location information, which was then sold without her knowledge. It recorded her whereabouts as often as every two seconds, according to a database of more than a million phones in the New York area that was reviewed by The New York Times. While Ms. Magrin's identity was not disclosed in those records, The Times was able to easily connect her to that dot.

The app tracked her as she went to a Weight Watchers meeting and to her dermatologist's office for a minor procedure. It followed her hiking with her dog and staying at her ex-boyfriend's home, information she found disturbing.

"It's the thought of people finding out those intimate details that you don't want people to know," said Ms. Magrin, who allowed The Times to review her location data.

Like many consumers, Ms. Magrin knew that apps could track people's movements. But as smartphones have become ubiquitous and technology more accurate, an industry of snooping on people's daily habits has spread and grown more intrusive.

At least 75 companies receive anonymous, precise location data from apps whose users enable location services to get local news and weather or other information, The Times found. Several of those businesses claim to track up to 200 million mobile devices in the United States - about half those in use last year. The database reviewed by The Times - a sample of information gathered in 2017 and held by one company - reveals people's travels in startling detail, accurate to within a few yards and in some cases updated more than 14,000 times a day.
[Learn how to stop apps from tracking your location.]
These companies sell, use or analyze the data to cater to advertisers, retail outlets and even hedge funds seeking insights into consumer behavior. It's a hot market, with sales of location-targeted advertising reaching an estimated $21 billion this year. IBM has gotten into the industry, with its purchase of the Weather Channel's apps. The social network Foursquare remade itself as a location marketing company. Prominent investors in location start-ups include Goldman Sachs and Peter Thiel, the PayPal co-founder.

Businesses say their interest is in the patterns, not the identities, that the data reveals about consumers. They note that the information apps collect is tied not to someone's name or phone number but to a unique ID. But those with access to the raw data - including employees or clients - could still identify a person without consent. They could follow someone they knew, by pinpointing a phone that regularly spent time at that person's home address. Or, working in reverse, they could attach a name to an anonymous dot, by seeing where the device spent nights and using public records to figure out who lived there.

Many location companies say that when phone users enable location services, their data is fair game. But, The Times found, the explanations people see when prompted to give permission are often incomplete or misleading. An app may tell users that granting access to their location will help them get traffic information, but not mention that the data will be shared and sold. That disclosure is often buried in a vague privacy policy.

"Location information can reveal some of the most intimate details of a person's life - whether you've visited a psychiatrist, whether you went to an A.A. meeting, who you might date," said Senator Ron Wyden, Democrat of Oregon, who has proposed bills to limit the collection and sale of such data, which are largely unregulated in the United States.

"It's not right to have consumers kept in the dark about how their data is sold and shared and then leave them unable to do anything about it," he added.

After Elise Lee, a nurse in Manhattan, saw that her device had been tracked to the main operating room at the hospital where she works, she expressed concern about her privacy and that of her patients.

"It's very scary," said Ms. Lee, who allowed The Times to examine her location history in the data set it reviewed. "It feels like someone is following me, personally."

The mobile location industry began as a way to customize apps and target ads for nearby businesses, but it has morphed into a data collection and analysis machine.

Retailers look to tracking companies to tell them about their own customers and their competitors'. For a web seminar last year, Elina Greenstein, an executive at the location company GroundTruth, mapped out the path of a hypothetical consumer from home to work to show potential clients how tracking could reveal a person's preferences. For example, someone may search online for healthy recipes, but GroundTruth can see that the person often eats at fast-food restaurants.

"We look to understand who a person is, based on where they've been and where they're going, in order to influence what they're going to do next," Ms. Greenstein said.

Financial firms can use the information to make investment decisions before a company reports earnings - seeing, for example, if more people are working on a factory floor, or going to a retailer's stores.

Health care facilities are among the more enticing but troubling areas for tracking, as Ms. Lee's reaction demonstrated. Tell All Digital, a Long Island advertising firm that is a client of a location company, says it runs ad campaigns for personal injury lawyers targeting people anonymously in emergency rooms.

"The book '1984,' we're kind of living it in a lot of ways," said Bill Kakis, a managing partner at Tell All.

Jails, schools, a military base and a nuclear power plant - even crime scenes - appeared in the data set The Times reviewed. One person, perhaps a detective, arrived at the site of a late-night homicide in Manhattan, then spent time at a nearby hospital, returning repeatedly to the local police station.

Two location firms, Fysical and SafeGraph, mapped people attending the 2017 presidential inauguration. On Fysical's map, a bright red box near the Capitol steps indicated the general location of President Trump and those around him, cellphones pinging away. Fysical's chief executive said in an email that the data it used was anonymous. SafeGraph did not respond to requests for comment.

More than 1,000 popular apps contain location-sharing code from such companies, according to 2018 data from MightySignal, a mobile analysis firm. Google's Android system was found to have about 1,200 apps with such code, compared with about 200 on Apple's iOS.

The most prolific company was Reveal Mobile, based in North Carolina, which had location-gathering code in more than 500 apps, including many that provide local news. A Reveal spokesman said that the popularity of its code showed that it helped app developers make ad money and consumers get free services.

To evaluate location-sharing practices, The Times tested 20 apps, most of which had been flagged by researchers and industry insiders as potentially sharing the data. Together, 17 of the apps sent exact latitude and longitude to about 70 businesses. Precise location data from one app, WeatherBug on iOS, was received by 40 companies. When contacted by The Times, some of the companies that received that data described it as "unsolicited" or "inappropriate."

WeatherBug, owned by GroundTruth, asks users' permission to collect their location and tells them the information will be used to personalize ads. GroundTruth said that it typically sent the data to ad companies it worked with, but that if they didn't want the information they could ask to stop receiving it.

The Times also identified more than 25 other companies that have said in marketing materials or interviews that they sell location data or services, including targeted advertising.
[Read more about how The Times analyzed location tracking companies.]
The spread of this information raises questions about how securely it is handled and whether it is vulnerable to hacking, said Serge Egelman, a computer security and privacy researcher affiliated with the University of California, Berkeley.

"There are really no consequences" for companies that don't protect the data, he said, "other than bad press that gets forgotten about."

Companies that use location data say that people agree to share their information in exchange for customized services, rewards and discounts. Ms. Magrin, the teacher, noted that she liked that tracking technology let her record her jogging routes.

Brian Wong, chief executive of Kiip, a mobile ad firm that has also sold anonymous data from some of the apps it works with, says users give apps permission to use and share their data. "You are receiving these services for free because advertisers are helping monetize and pay for it," he said, adding, "You would have to be pretty oblivious if you are not aware that this is going on."

But Ms. Lee, the nurse, had a different view. "I guess that's what they have to tell themselves," she said of the companies. "But come on."

Ms. Lee had given apps on her iPhone access to her location only for certain purposes - helping her find parking spaces, sending her weather alerts - and only if they did not indicate that the information would be used for anything else, she said. Ms. Magrin had allowed about a dozen apps on her Android phone access to her whereabouts for services like traffic notifications.

But it is easy to share information without realizing it. Of the 17 apps that The Times saw sending precise location data, just three on iOS and one on Android told users in a prompt during the permission process that the information could be used for advertising. Only one app, GasBuddy, which identifies nearby gas stations, indicated that data could also be shared to "analyze industry trends."

More typical was theScore, a sports app: When prompting users to grant access to their location, it said the data would help "recommend local teams and players that are relevant to you." The app passed precise coordinates to 16 advertising and location companies.

A spokesman for theScore said that the language in the prompt was intended only as a "quick introduction to certain key product features" and that the full uses of the data were described in the app's privacy policy.

The Weather Channel app, owned by an IBM subsidiary, told users that sharing their locations would let them get personalized local weather reports. IBM said the subsidiary, the Weather Company, discussed other uses in its privacy policy and in a separate "privacy settings" section of the app. Information on advertising was included there, but a part of the app called "location settings" made no mention of it.

The app did not explicitly disclose that the company had also analyzed the data for hedge funds - a pilot program that was promoted on the company's website. An IBM spokesman said the pilot had ended. (IBM updated the app's privacy policy on Dec. 5, after queries from The Times, to say that it might share aggregated location data for commercial purposes such as analyzing foot traffic.)

Even industry insiders acknowledge that many people either don't read those policies or may not fully understand their opaque language. Policies for apps that funnel location information to help investment firms, for instance, have said the data is used for market analysis, or simply shared for business purposes.

"Most people don't know what's going on," said Emmett Kilduff, the chief executive of Eagle Alpha, which sells data to financial firms and hedge funds. Mr. Kilduff said responsibility for complying with data-gathering regulations fell to the companies that collected it from people.

Many location companies say they voluntarily take steps to protect users' privacy, but policies vary widely.

For example, Sense360, which focuses on the restaurant industry, says it scrambles data within a 1,000-foot square around the device's approximate home location. Another company, Factual, says that it collects data from consumers at home, but that its database doesn't contain their addresses.

Some companies say they delete the location data after using it to serve ads, some use it for ads and pass it along to data aggregation companies, and others keep the information for years.

Several people in the location business said that it would be relatively simple to figure out individual identities in this kind of data, but that they didn't do it. Others suggested it would require so much effort that hackers wouldn't bother.

It "would take an enormous amount of resources," said Bill Daddi, a spokesman for Cuebiq, which analyzes anonymous location data to help retailers and others, and raised more than $27 million this year from investors including Goldman Sachs and Nasdaq Ventures. Nevertheless, Cuebiq encrypts its information, logs employee queries and sells aggregated analysis, he said.

There is no federal law limiting the collection or use of such data. Still, apps that ask for access to users' locations, prompting them for permission while leaving out important details about how the data will be used, may run afoul of federal rules on deceptive business practices, said Maneesha Mithal, a privacy official at the Federal Trade Commission.

"You can't cure a misleading just-in-time disclosure with information in a privacy policy," Ms. Mithal said.

Apps form the backbone of this new location data economy.

The app developers can make money by directly selling their data, or by sharing it for location-based ads, which command a premium. Location data companies pay half a cent to two cents per user per month, according to offer letters to app makers reviewed by The Times.

Targeted advertising is by far the most common use of the information.

Google and Facebook, which dominate the mobile ad market, also lead in location-based advertising. Both companies collect the data from their own apps. They say they don't sell it but keep it for themselves to personalize their services, sell targeted ads across the internet and track whether the ads lead to sales at brick-and-mortar stores. Google, which also receives precise location information from apps that use its ad services, said it modified that data to make it less exact.

Smaller companies compete for the rest of the market, including by selling data and analysis to financial institutions. This segment of the industry is small but growing, expected to reach about $250 million a year by 2020, according to the market research firm Opimas.

Apple and Google have a financial interest in keeping developers happy, but both have taken steps to limit location data collection. In the most recent version of Android, apps that are not in use can collect locations "a few times an hour," instead of continuously.

Apple has been stricter, for example requiring apps to justify collecting location details in pop-up messages. But Apple's instructions for writing these pop-ups do not mention advertising or data sale, only features like getting "estimated travel times."

A spokesman said the company mandates that developers use the data only to provide a service directly relevant to the app, or to serve advertising that met Apple's guidelines.

Apple recently shelved plans that industry insiders say would have significantly curtailed location collection. Last year, the company said an upcoming version of iOS would show a blue bar onscreen whenever an app not in use was gaining access to location data.

The discussion served as a "warning shot" to people in the location industry, David Shim, chief executive of the location company Placed, said at an industry event last year.

After examining maps showing the locations extracted by their apps, Ms. Lee, the nurse, and Ms. Magrin, the teacher, immediately limited what data those apps could get. Ms. Lee said she told the other operating-room nurses to do the same.

"I went through all their phones and just told them: 'You have to turn this off. You have to delete this,'" Ms. Lee said. "Nobody knew."

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Your Apps Know Where You Were Last Night, and They're Not Keeping It Secret (Published 2018)

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The millions of dots on the map trace highways, side streets and bike trails - each one following the path of an anonymous cellphone user. One path tracks someone from a home outside Newark to a nearby Planned Parenthood, remaining there for more than an hour.

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A mosaic of about 50,000 images from the MegaFace dataset, which includes over 3.5 million. Credit... via Adam Harvey

An online tool targets only a small slice of what's out there, but may open some eyes to how widely artificial intelligence research fed on personal images.

A mosaic of about 50,000 images from the MegaFace dataset, which includes over 3.5 million. Credit... via Adam Harvey

When tech companies created the facial recognition systems that are rapidly remaking government surveillance and chipping away at personal privacy, they may have received help from an unexpected source: your face.

Companies, universities and government labs have used millions of images collected from a hodgepodge of online sources to develop the technology. Now, researchers have built an online tool, Exposing.AI, that lets people search many of these image collections for their old photos.

The tool, which matches images from the Flickr online photo-sharing service, offers a window onto the vast amounts of data needed to build a wide variety of A.I technologies, from facial recognition to online " chatbots."

"People need to realize that some of their most intimate moments have been weaponized," said Liz O'Sullivan, the technology director at the Surveillance Technology Oversight Project, a privacy and civil rights group. She collaborated on Exposing.AI with Adam Harvey, a researcher and artist in Berlin.

Systems using artificial intelligence don't magically become smart. They learn by pinpointing patterns in data generated by humans - photos, voice recordings, books, Wikipedia articles and all sorts of other material. The technology is getting better all the time, but it can learn human biases against women and minorities.

People may not know they are contributing to A.I. education. For some, this is a curiosity. For others, it is enormously creepy. And it can be against the law. A 2008 law in Illinois, the Biometric Information Privacy Act, imposes financial penalties if the face scans of residents are used without their consent.

In 2006, Brett Gaylor, a documentary filmmaker from Victoria, British Columbia, uploaded his honeymoon photos to Flickr, a popular service then. Nearly 15 years later, using an early version of Exposing.AI provided by Mr. Harvey, he discovered that hundreds of those photos had made their way into multiple data sets that may have been used to train facial recognition systems around the world.

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Brett Gaylor uploaded this honeymoon photo to Flickr years ago, and it may have been used to train facial recognition at labs across the globe. Credit... via Brett Gaylor

Flickr, which was bought and sold by many companies over the years and is now owned by the photo-sharing service SmugMug, allowed users to share their photos under what is called a Creative Commons license. That license, common on internet sites, meant others could use the photos with certain restrictions, though these restrictions may have been ignored. In 2014, Yahoo, which owned Flickr at the time, used many of these photos in a data set meant to help with work on computer vision.

Mr. Gaylor, 43, wondered how his photos could have bounced from place to place. Then he was told that the photos may have contributed to surveillance systems in the United States and other countries, and that one of these systems was used to track China's Uighur population.

"My curiosity turned to horror," he said.

How honeymoon photos helped build surveillance systems in China is, in some ways, a story of unintended - or unanticipated - consequences.

Years ago, A.I. researchers at leading universities and tech companies began gathering digital photos from a wide variety of sources, including photo-sharing services, social networks, dating sites like OkCupid and even cameras installed on college quads. They shared those photos with other organizations.

That was just the norm for researchers. They all needed data to feed into their new A.I. systems, so they shared what they had. It was usually legal.

One example was MegaFace, a data set created by professors at the University of Washington in 2015. They built it without the knowledge or consent of the people whose images they folded into its enormous pool of photos. The professors posted it to the internet so others could download it.

MegaFace has been downloaded more than 6,000 times by companies and government agencies around the world, according to a New York Times public records request. They included the U.S. defense contractor Northrop Grumman; In-Q-Tel, the investment arm of the Central Intelligence Agency; ByteDance, the parent company of the Chinese social media app TikTok; and the Chinese surveillance company Megvii.

Researchers built MegaFace for use in an academic competition meant to spur the development of facial recognition systems. It was not intended for commercial use. But only a small percentage of those who downloaded MegaFace publicly participated in the competition.

"We are not in a position to discuss third-party projects," said Victor Balta, a University of Washington spokesman. "MegaFace has been decommissioned, and MegaFace data are no longer being distributed."

Credit... Gilles Sabrié for The New York Times

Some who downloaded the data have deployed facial recognition systems. Megvii was blacklisted last year by the Commerce Department after the Chinese government used its technology to monitor the country's Uighur population.

The University of Washington took MegaFace offline in May, and other organizations have removed other data sets. But copies of these files could be anywhere, and they are likely to be feeding new research.

Ms. O'Sullivan and Mr. Harvey spent years trying to build a tool that could expose how all that data was being used. It was more difficult than they had anticipated.

They wanted to accept someone's photo and, using facial recognition, instantly tell that person how many times his or her face was included in one of these data sets. But they worried that such a tool could be used in bad ways - by stalkers or by companies and nation states.

"The potential for harm seemed too great," said Ms. O'Sullivan, who is also vice president of responsible A.I. with Arthur, a New York company that helps businesses manage the behavior of A.I. technologies.

In the end, they were forced to limit how people could search the tool and what results it delivered. The tool, as it works today, is not as effective as they would like. But the researchers worried that they could not expose the breadth of the problem without making it worse.

Exposing.AI itself does not use facial recognition. It pinpoints photos only if you already have a way of pointing to them online, with, say, an internet address. People can search only for photos that were posted to Flickr, and they need a Flickr username, tag or internet address that can identify those photos. (This provides the proper security and privacy protections, the researchers said.)

Though this limits the usefulness of the tool, it is still an eye-opener. Flickr images make up a significant swath of the facial recognition data sets that have been passed around the internet, including MegaFace.

It is not hard to find photos that people have some personal connection to. Simply by searching through old emails for Flickr links, The Times turned up photos that, according to Exposing.AI, were used in MegaFace and other facial recognition data sets.

Several belonged to Parisa Tabriz, a well-known security researcher at Google. She did not respond to a request for comment.

Mr. Gaylor is particularly disturbed by what he has discovered through the tool because he once believed that the free flow of information on the internet was mostly a positive thing. He used Flickr because it gave others the right to use his photos through the Creative Commons license.

"I am now living the consequences," he said.

His hope - and the hope of Ms. O'Sullivan and Mr. Harvey - is that companies and government will develop new norms, policies and laws that prevent mass collection of personal data. He is making a documentary about the long, winding and occasionally disturbing path of his honeymoon photos to shine a light on the problem.

Mr. Harvey is adamant that something has to change. "We need to dismantle these as soon as possible - before they do more harm," he said.

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Here's a Way to Learn if Facial Recognition Systems Used Your Photos

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An online tool targets only a small slice of what's out there, but may open some eyes to how widely artificial intelligence research fed on personal images. A mosaic of about 50,000 images from the MegaFace dataset, which includes over 3.5 million. Credit...

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A decades-old rule, in which research scientists are forbidden to experiment on human embryos beyond the 14-day mark, is being challenged by a British bioethicist, who says the rule is outdated, arbitrary, and an unnecessary impediment to scientific progress.

By extending the 14-day limit to 28 days, scientists will be better able to prevent miscarriages, develop new medical treatments, and improve assisted reproductive technologies, argues Sophia McCully, a bioethicist from the Department of Global Health and Social Medicine at King's College London, in a peer-reviewed opinion piece published today in the Journal of Medical Ethics.

The 14-day rule has been around for about 40 years. In the United States, this rule has been enforced by the National Institutes of Health since 1979. In the United Kingdom, the rule is upheld by the Human Fertilisation and Embryology Authority. The 14-day rule is honored in many other countries and jurisdictions, including Australia and Canada, both formally and informally.

This line-in-the-sand was chosen because it's only after this stage that the central nervous system starts to develop, but, as McCully writes, "opponents of the rule argue that this was simply an arbitrary time limit that was chosen as a compromise to permit any research at a time when prolife views were strong." What's more, "we can now be confident it is safe to make a policy change and extend the 14-day rule without fear of any moral and regulatory slippery slope, a concern which need not apply to the 14-day rule," she writes.

McCully contends that research done between the 15- to 28-day window is critical, saying massive developmental changes are experienced by the embryo during this time.

Research on human embryos during this timeframe could lead to many new scientific insights and interventions, she says, including the mitigation of birth defects (such as heart disease), advances in in vitro fertilization, the prevention of miscarriages, and the testing of new techniques, including mitochondrial replacement therapy (colloquially known as "three-parent babies") and human trait selection (the latter to eliminate genetic diseases or confer new capacities, such as immunities to communicable diseases).

She says the argument that animal models, including monkey embryos, are sufficient substitutes for human embryos is not entirely accurate. Recent evidence suggests "that even the morphology of the mammalian blastocyst differs substantially among species," McCully writes, and as such, "while animal models are useful to an extent, after all some mechanisms are similar, this diversity shows there is really no substitute for a human embryo to understand human embryogenesis."

The 14-day limitation also seems arbitrary considering prevailing abortion laws, in which pregnancies can be terminated well beyond 14 days, she writes.

"From this analysis, and that of others, there are no substantive ethical reasons for not altering the limit," argues McCully. "Embryo research is a crucial undertaking and will help us to make many transformational discoveries, thus extending this very arbitrary limit is an endeavour that must be achieved."

James Hughes, a bioethicist with the Institute for Ethics and Emerging Technologies, said two weeks is not a significant delineator for determining the moral significance of an embryo and fetus. During the 18th century, the "line was 'quickening,' when a fetus began to move," explained Hughes in an email, while more recently, with the Roe v Wade decision in the U.S., this precedent "invented moral lines at the first, second, and third trimester."

Hughes agreed that scientists shouldn't have to treat embryonic tissues as being exactly the same as other tissues, "but if its moral significance is determined by its ability to experience pain or self-awareness, then one-month-old embryos might as well be a tumor or kidney," said Hughes. Ultimately, McCully's piece presents a "very cautious proposal to advance research that will benefit all children, with no moral hazard," Hughes said, adding that it's a "necessary reform."

Bioethicist Kerry Bowman from the University of Toronto said the 14-day rule was established not just because of the "primitive streak"-an objective, visible streak of cells (indicative of a nascent central nervous system)-but also because individuation is believed to commence, meaning that, after this time, the "embryo is no longer capable of forming twins or higher-order multiples spontaneously," which secure "the beginnings of an individual," he wrote in an email.

"Yet I would argue the real reason for the 14-day limit is to show a spirit of respect in complex pluralistic societies with a wide range of views on the moral status of the embryo," explained Bowman. "The 14-day rule did not satisfy everyone, but it does acknowledge and respect many people who hold 'gradualist' views of the moral status of the embryo."

A major challenge with the proposed change, he said, is that by breaking a highly symbolic, public, and (often) international standard, scientists might lose trust from certain segments of the population and even other nations.

"I believe this change needs broad public exposure and debate, as pushing this through without public review could create significant hostility to the field of embryology," said Bowman.

In recent years, other experts have made a similar case to the one being made in the Journal of Medical Ethics (see , , and ), yet nothing seems to change in this regard. Perhaps McCully's paper will restart this much-needed conversation.

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The 'Time Has Come' to Extend Human Embryo Research From 14 to 28 Days, Argues Bioethicist

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A decades-old rule, in which research scientists are forbidden to experiment on human embryos beyond the 14-day mark, is being challenged by a British bioethicist, who says the rule is outdated, arbitrary, and an unnecessary impediment to scientific progress.

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Cells of a young man who died of cancer fueling breakthroughs

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Even as he was dying, he worked to raise awareness of pediatric cancer. Now scientists are using his cells to help others.

From left, Tyler Trent, Dr. Jamie L. Renbarger and Dr. Karen E. Pollok. Credit... Kelly Trent

Approximately 85 percent of children with cancer are cured. However, about 15 percent confront the sort of aggressive disease that cut short the life of Tyler Trent at the age of 20 on Jan. 1, 2019. "One hundred years down the line, maybe my legacy could have an impact": so Tyler said about his efforts to raise awareness of the need for further research in pediatric oncology. Two years after his death, Tyler's physicians continue to help incurable as well as cured children lead longer and better lives.

Back in 2014, when Tyler was 15, he was found to have a rare form of osteosarcoma in his arm and underwent treatments at Riley Hospital for Children in Indianapolis. But two years later, at the end of his senior year of high school, the disease reappeared in his pelvis. Despite another surgery as well as chemotherapy, he resolved to start as a freshman at Purdue University.

Bald and on crutches, he entered Purdue with a presidential scholarship and soon became a Boilermaker football superfan as he coped with life-threatening complications caused by yet another recurrence in his spine. He was at death's door a few days before he attended the Purdue football game against Ohio State that he correctly predicted would result in an upset Boilermaker victory and his being named honorary team captain for a game played in one of the holiday bowls. At Purdue today, an undergraduate scholarship and a student gate at the football stadium memorialize his name.

One of Tyler's doctors, Dr. Jamie Renbarger, currently heads Riley's Center for Cancer and Blood Disorders and the Pediatric Precision Genomics Program, which serves children with aggressive solid tumors, high risk leukemias, and relapsed cancers, all of which are associated with poor outcomes. In consultation with a child's oncologist and with a team of scientists, Dr. Renbarger uses genetic testing to identify DNA, RNA and proteins in cancer cells that can be targeted with different treatment options specific to the child's needs.

According to Dr. Renbarger, "in about 85 to 90 percent of cases, we've found something clinically relevant about the patient or the tumor as a result of testing to help further guide therapy." Dr. Renbarger is drawn to targeted therapies because they "may have fewer side effects than previous treatments, helping the child have a better quality of life and improving survival rates."

Her optimism has been buoyed by the breakthrough of a colleague, Karen E. Pollok, who has used the cancer cells donated by Tyler Trent - they are called TT2 - to find a combination of drugs that substantially retards tumor growth. The donors of tumor samples are generally kept anonymous, but Tyler's parents wanted to continue honoring his activism.

Dr. Pollok, who along with Dr. Renbarger visited Tyler two weeks before he died, was inspired by the meeting: "He was busily answering texts, tweets and managing Facebook to fulfill his last mission: to raise awareness for pediatric cancer research." Today, Dr. Pollok adds, "our lab-quote when we discuss the research using Tyler's cells is, 'We will never give up!'" At the start of the coronavirus pandemic, her work on Tyler's tumor models was deemed essential. She and colleagues published research in August in the journal Cancers that demonstrated that a combination of drugs could block the growth of these aggressive cancers.

Even after Tyler suffered seizures, clogged kidney tubes, emergency operations, and fevers that landed him in hospice, he gave interviews and published essays that testified to his remarkable ability to continue expressing himself in his unique way. Though Tyler never entered full adulthood, he managed to sustain "his passion to do whatever he could, even in the midst of this crazy, horrible journey that he was on," Dr. Renbarger says.

Children with cancer, whether or not they are cured, need to find ways to retain a sense of themselves while dealing with the deleterious side effects of cytotoxic treatments. Dr. Renbarger therefore helped to create the Karuna Precision Wellness Center, where she works with individuals during and after cancer treatments to optimize their long-term quality of life through personalized integrative and wellness plans. The areas of focus include physical functioning, mental health (cognitive and emotional), and nutrition.

Kids especially face post-therapy hurdles, Dr. Renbarger believes, for they may experience alienation from their peers, anxiety, attention deficits and cognitive disorders related to memory, mental processing and executive functioning. Reintegration into school can be challenging. Additionally, since children who have received treatment "age at a faster rate," they can be "more susceptible to diseases associated with aging like strokes, diabetes, joint and heart problems." In an outpatient clinic, Dr. Renbarger assembles multidisciplinary teams - specialists in cardiology, adolescent medicine and fertility as well as educational and vocational coaches - to see pediatric patients into the best possible adulthood.

A similar determination led Tyler to donate a portion of the proceeds from his book, " The Upset: Life (Sports), Death ... and the Legacy We Leave in the Middle," toward cancer research. Along with his co-author, John Driver, and others, he composed it when his entire body had surrendered to paralysis except for his right arm. The voices of his parents, brothers and spiritual advisers supplement his account and form a sort of chorus. What emerges is a multifaceted portrait of a deeply religious young man fully convinced that "There is always an opportunity to help heal others' hurts."

" The Upset"underscores the conviction of Tyler's parents that "when a child gets cancer, a family gets cancer" and extends his efforts to hasten that time when no family with cancer will be left behind.

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Even as he was dying, he worked to raise awareness of pediatric cancer. Now scientists are using his cells to help others. Approximately 85 percent of children with cancer are cured. However, about 15 percent confront the sort of aggressive disease that cut short the life of Tyler Trent at the age of 20 on Jan.

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A new study found that 71% of respondents took the time check their advanced privacy settings when ... [+]
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According to a new study from Viasat Savings, nearly 50% of those surveyed keep their social media accounts in private mode, while the remaining half chose to be public and open. In addition, many people are keeping social media accounts and the accompanying apps as a form of convenience.

"Different generations view social media differently," said Autumn Knowles, residential and business telecommunications specialist at Viasat Savings.

"For example, when we asked people why they keep an app rather than delete it, most respondents agreed that it was to stay in touch with friends and family," Knowles added. "Only GenZ respondents were more likely to keep certain apps because they use them to log into other online accounts. GenZ differs from other generations in that they view their social apps as online tools rather than as a means to stay connected to others."

The study did find that 71% of respondents took the time check their advanced privacy settings when they joined a social media platform.

"We didn't expect such a high number of people (71%) to check their advanced privacy settings," Knowles noted. "It's a good sign that people take control of their privacy settings when given the opportunity."

In addition, 50% of respondents in the Viasat Savings survey said they updated their privacy settings in the last year due to privacy concerns.

"With 2019 being notorious for cyberattacks and data breaches, it's no wonder that half of respondents decided to tighten up their social privacy settings," said Knowles.
Social Media As The New Hacking Target
However, even with the above efforts - experts agree that everyone should be more diligent about privacy. Just this week the personal information of an estimated 100,000+ social media influencers was compromised and/or partially leaked following the breach of social media marketing company Preen.Me.

According to a report from RiskBasedSecurity.com, more than 250,000 social media users may have also had their information fully exposed on a deep web hacking forum.

The leak was discovered on June 6, 2020 when a known threat actor posted on a popular deep web/dark web hacking forum that he/they had compromised the Preen.Me system and were then holding the personal information of more than 100,000 affiliated influencers for ransom.

This type of attack is shocking, but security experts say it really shouldn't be. Social media, especially amongst influencers has been about "sharing" and this includes over sharing, often of personal information.

"While people generally focus on breaches that involve passwords, credit card numbers, or other financial details, breaches of this magnitude that compromise a significant amount of personal information cannot be ignored," said Erich Kron, security awareness advocate at KnowBe4.

"It is important to understand that not only was the information about the individual stolen, but other data such as Facebook friend lists and additional data that could even put others at risk," added Kron. "Given the volume of information lost here, it is important that the organization contact victims as soon as possible and that they provide a statement about the breach, something they have not done yet."
Doxing On The Rise
KnowBe4's experts have warned that the practice of doxing, or releasing personal information about people's addresses, phone numbers or even employers, has long been looked upon as grievous offence in the cybersecurity community due to the potential impact is can have on the victims.

"This breach has released the same information about hundreds of thousands of victims who also are now at risk," warned Korn. "The 253,051 records that contain information such as Facebook account names and associated friend lists is a gold mine for social engineers. This information can be used to create fake lookalike accounts that can then be used to attack these friends. It is not uncommon to see these attacks used, often through a friend request or a message request that makes the user believe they are speaking to the real person, to spread malware or perpetrate other scams."

While such acts will likely rise, cutting ties on social media need not be the answer. Instead, everyone - influencers included - should be wary of the practice of over sharing while personal details should remain persona.

In the meantime, those recent victims will need to be especially attentive.

"These victims of the breach should be very vigilant toward future emails, text messages and phone calls," said Kron, adding, "as these are prime attack techniques for this type of information."

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There Isn't Enough Privacy On Social Media And That Is A Real Problem

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According to a new study from Viasat Savings, nearly 50% of those surveyed keep their social media accounts in private mode, while the remaining half chose to be public and open. In addition, many people are keeping social media accounts and the accompanying apps as a form of convenience.

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"Human Cloning" by newsonline is licensed under CC BY 2.0
Cloning is a form of asexual reproduction. A child produced by cloning would be the genetic duplicate of an existing person. If you cloned yourself, the resulting child would be neither your son or daughter nor your twin brother or sister, but a new category of human being: your clone.

The great majority of people have an intuitive sense that human beings should not be cloned. Arguments offered for and against reproductive cloning are given below. A summary comment follows at the end of the arguments.
Arguments Against Reproductive Cloning
1. Reproductive cloning would foster an understanding of children, and of people in general, as objects that can be designed and manufactured to possess specific characteristics.

2. Reproductive cloning would diminish the sense of uniqueness of an individual. It would violate deeply and widely held convictions concerning human individuality and freedom, and could lead to a devaluation of clones in comparison with non-clones.

3. Cloned children would unavoidably be raised "in the shadow" of their nuclear donor, in a way that would strongly tend to constrain individual psychological and social development.

4. Reproductive cloning is inherently unsafe. At least 95% of mammalian cloning experiments have resulted in failures in the form of miscarriages, stillbirths, and life-threatening anomalies; some experts believe no clones are fully healthy. The technique could not be developed in humans without putting the physical safety of the clones and the women who bear them at grave risk.

5. If reproductive cloning is permitted to happen and becomes accepted, it is difficult to see how any other dangerous applications of genetic engineering technology could be proscribed.
Rebuttals to Arguments Against Reproductive Cloning
1 and 2. This will be true only if we allow it to be true. There is no reason that individuals and society can't learn to embrace human clones as just one more element of human diversity and creativity.

3. The problem of "expectations" is hardly unique to cloned children. Most parents learn to communicate their expectations about their children in a moderate and ultimately positive way.

4. Every medical technology carries with it a degree of risk. Cloning techniques will eventually be perfected in mammals and will then be suitable for human trials.

5. Human society can accept or reject any proposed technology on its own merits.
Arguments in Favor of Reproductive Cloning
1. Reproductive cloning can provide genetically related children for people who cannot be helped by other fertility treatments (i.e., who do not produce eggs or sperm).

2. Reproductive cloning would allow lesbians to have a child without having to use donor sperm, and gay men to have a child that does not have genes derived from an egg donor (though, of course, a surrogate would have to carry the pregnancy).

3. Reproductive cloning could allow parents of a child who has died to seek redress for their loss.

4. Cloning is a reproductive right, and should be allowed once it is judged to be no less safe than natural reproduction.
Rebuttals to Arguments in Favor of Reproductive Cloning
1. The number of men and women who do not produce eggs or sperm at all is very small, and has been greatly reduced by modern assisted-reproduction techniques. If cloning could be perfected and used for this limited group, it would be all but impossible to prevent its use from spreading. Further, this argument appropriates the phrase "genetically related" to embrace a condition that has never before occurred in human history, one which abolishes the genetic variations that have always existed between parent and child.

2. Even if cloning were safe, it would be impossible to allow reproductive cloning for lesbians or gay men without making it generally available to all. Policy and social changes that protect lesbian and gay families are a much more pressing need.

3. Throughout history, parents who have lost children have grieved and sought consolation from family and community. "Replacing" the deceased child by cloning degrades and dehumanizes the child, its replacement, and all of us.

4. Rights are socially negotiated, and no "right" to clone oneself has ever been established. Furthermore, there is an immense difference between a woman's desire to terminate an unwanted pregnancy and the desire to create a genetic duplicate of another person. There is no inconsistency between supporting the former and opposing the latter.
Summary Comment
Most advocates of human cloning also advocate the genetic modification of the human species. Human cloning is a blunt form of eugenics-it "copies" an existing genome-while inheritable genetic modification allows the creation of "designer babies" through manipulation of individual genes. But cloning technologies are needed if inheritable genetic modification is to become commercially practicable. This is the deeper and more far-reaching motivation behind much of the advocacy of human cloning.

The Center for Genetics and Society believes that when all the arguments are considered together the case for allowing human cloning is not compelling, and that the harms of doing so are great.
Last modified August 3, 2021

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Reproductive Cloning Arguments Pro and Con

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"Human Cloning" by newsonline is licensed under CC BY 2.0

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Human cloning is justified in preventing genetic disease

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He made his comments in an article published last week in New Scientist (2004;181(2435):12), saying that it would be acceptable if it helped prevent genetic disease. "[Human] cloning promises such great benefits that it would be immoral not to do it," wrote Dr Wilmut, joint head of the department of gene expression and development at the Roslin Institute, Edinburgh.

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An argument against the "right" to do just as you please

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While there is no longer any scientific doubt that wearing face masks mitigates the incidence of coronavirus cases, the controversy surrounding their use has been politicized by some whose motives go beyond the welfare of our people, especially the most vulnerable among us. Wearing face masks is a health issue not a political issue yet face masks have become a divisive political statement. Those who wear them are taken as left leaning, liberal and democrat while those who do not are seen as right leaning, conservative and republican. Meanwhile, the 800-1,000 people who die each day as we experience a rapid resurgence of this disease are testament that covid-19 pays no attention to politics.

The covid-19 pandemic threatens to spiral out of control in the United States, the new epicenter of this disease. By mid-July 2020, there were approximately 3.5 million cases and 140,000 deaths attributed to covid-19 in the US. This accounts for approximately 25 per cent of all cases and deaths worldwide, despite the fact that the US has only five percent of the world's population.

Politicizing our national health crisis beg the questions: Who are we as a nation? Has the recent political mantra of some advanced from "America First" to "Me First"? Have we become a nation in pursuit of self-interest without adequate consideration of the common good of all?

For people of good will, the answers to these questions must be no!

We have allowed our country to politicize humanity, to make caring for one another a partisan issue. We wear face masks to protect others in the same way we reject systemic racism to ensure health and equality for all. We cannot continue to allow human decency and caring about our neighbors to be swallowed by politics and partisanship.

Face masks should be seen for what they are - a health aid and a proven benefit to decreasing the transmission of the coronavirus. The self-interested actions of those who have politicized mask-wearing over the common good of all tear at the moral fiber of this country. In doing so, they have contributed to the recent and dramatic rise of coronavirus cases in this country and, with it, the inevitable increase in hospitalizations and deaths that bring tragedies to our families and that threaten to once again overwhelm our health care system.

Our national leadership has failed to provide a plan and the encouragement necessary to overcome this crisis. While there was a time when other countries looked to US policy as a beacon of light in the midst of turmoil, they are now looking away. We, the people of this country, must now assume that leadership.

Let us rise to the occasion and transmit a message of hope and the resolve to bear the necessary burdens to defeat this scourge of our time by rejecting the politicization of a health issue. Let us show our better selves and live for the common good of all by following the guidelines offered by our scientific community and not the whim of those who just wish the problem would go away.

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Face Masks and the Common Good of All - A Faith That Does Justice

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While there is no longer any scientific doubt that wearing face masks mitigates the incidence of coronavirus cases, the controversy surrounding their use has been politicized by some whose motives go beyond the welfare of our people, especially the most vulnerable among us.

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A link to a series of Articles investigating Big Tech and the future of privacy

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Opinion | The Privacy Project (Published 2019)

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The New York Times is launching an ongoing examination of privacy. We’ll dig into the ideas, history and future of how our information navigates the digital ecosystem and what’s at stake.

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On Tuesday, President Donald Trump dismissed concerns about Covid-19. As he put it, the virus is "under control" in the US and the "whole situation will start working out." But according to Politico, Trump is privately voicing worries that the impact of the virus will undermine his chances of reelection. His panicked actions of late-including preventing an American from being treated in Alabama, at the request of a fearful Senator Richard Shelby-confirm that this virus is a political event of the first magnitude. While few in Washington have internalized it, the coronavirus is the biggest story in the world and is soon going to smash into our electoral politics in unpredictable ways.

Matt Stoller (@matthewstoller) is the author of Goliath: The Hundred Year War Between Monopoly Power and Democracy (2019) and a fellow at the Open Markets Institute.

As Jon Stokes notes, we will, in all likelihood, be locking down travel in some areas of the US for several weeks, as they did in China. People may be advised against gathering in large groups. It's not clear what any of this will mean for campaigning or primary voting, whether most of us will vote by mail or have our votes delayed.

Moreover, the coronavirus is going to introduce economic conditions with which few people in modern America are familiar: the prospect of shortages. After 25 years of offshoring and consolidation, we now rely on overseas production for just about everything. Now in the wake of the coronavirus, China has shut down much of its production; South Korea and Italy will shut down as well. Once the final imports from these countries have worked their way through the supply chains and hit our shores, it could be a while before we get more. This coronavirus will reveal, in other words, a crisis of production-and one that's coming just in time for a presidential election.

We've been through something like this once before. My book describes the 1932 campaign for president, one that was carried out at the depths of the Great Depression and during an era when our productive capacity was shut down. Though the crisis at that time was caused by a banking collapse, not a pandemic, the political backdrop was analogous. Eighty-eight years ago, "old order" politicians, as they were known, proved unwilling-even in the face of crisis-to have the government apply its power toward the broader public benefit. Their recalcitrance prefigured, in certain ways, the reflexively libertarian thinking of today.

A toxic ideology invited disaster in 1932, as policymakers did little in response to the collapse of thousands of banks and businesses. At the depth of that depression, cotton hit its lowest price in 200 years and steel production fell to 15 percent of capacity. The situation became so desperate that in just one city, Toledo, Ohio, 60,000 of the 300,000 residents stood in bread lines every day. Children were competing with rats for food. And thousands were dying of dysentery. The politics too turned desperate, with one labor leader telling Congress that "if the Congress of the United States and this administration do not do something to meet this situation adequately, next winter it will not be a cry to save the hungry, but it will be a cry to save the government."

And yet, the old order had no answers. Congress held hearings, but businessmen, academics, and bankers proffered only belt-tightening. Within the Republican establishment, President Herbert Hoover worked 18-hour days, exhorting confidence while refusing to take even basic steps such as having the government guarantee bank deposits. Instead, his administration's army attacked hungry protesters in Washington, DC, a move that prompted an angry Republican congressman, Fiorello La Guardia of New York, to remind the president: "Soup is cheaper than tear gas bombs."

Meanwhile on the Democratic side, conservatives and progressives in the party were locked in a bitter battle for the nomination. Many Democrats agreed with Hoover. Maryland governor and presidential candidate Albert Ritchie, for instance, argued that we should rely "less on politics, less on laws, less on government." Another candidate, Speaker of the House John Nance Garner, claimed the greatest threat was the "tendency toward socialism and communism" and pledged a massive cut in government spending, as well as a sales tax increase. Others turned to extreme racism and xenophobia. Only Franklin Delano Roosevelt, who went on to win a contested convention, campaigned on aggressive government involvement in the economy-or as he put it, a "workable program of reconstruction," which later became the New Deal.

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Covid-19 Will Mark the End of Affluence Politics

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On Tuesday, President Donald Trump dismissed concerns about Covid-19. As he put it, the virus is "under control" in the US and the "whole situation will start working out." But according to Politico, Trump is privately voicing worries that the impact of the virus will undermine his chances of reelection.

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Brief History of Gov't Responses to Earlier Viruses

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Credit... Nicholas Konrad

Opinion
Now, after many fire drills, the world may be facing a real fire.

By

Back in 2002, when the SARS virus made its fateful leap from bats to civet cats to humans, global health experts warned that the ensuing outbreak was a harbinger of things to come: Climate change and globalization were conspiring with an array of other forces to make it much easier for old animal diseases to morph into new human ones. It was only a matter of time before one of those diseases proved truly catastrophic. The world could avert the worst consequences if it started planning.

But SARS was quickly contained (in part because the virus itself was so deadly that it was easy to detect). The disease faded from public consciousness and, with it, any sense of urgency over future outbreaks.

In 2009, when swine flu first emerged in the United States - scientists later traced the virus to pig farms in Mexico - experts warned again that a longer-term game plan was needed, one that was proactive rather than reactive. Again, headlines and hand-wringing followed. Again, the outbreak proved mild and passed quickly. Again, the world and its leaders moved on without heeding the warnings.

The panic-then-forget cycle was broken briefly in 2014, when Ebola tore through West Africa. President Barack Obama created a new office and established a special emergency fund to improve federal response efforts. His administration also launched a global initiative meant to help high-risk, low-income countries prepare for future outbreaks. By 2018, that progress had been undone. The office was disbanded and the funds were rescinded, even as a second Ebola outbreak emerged in the Democratic Republic of Congo.

Here we are again. In December, another new virus - SARS-CoV-2 - made the leap from animals to humans. It has now infected more than 83,000 people across more than 50 countries. Nearly 3,000 people have died, most of them in China where the outbreak began. Global health experts are once again sounding the alarm. It's unclear how bad things might get this time around. Covid-19, the disease caused by this new virus, appears to be between seven and 20 times more deadly than seasonal flu, which on average kills between 300,000 and 650,000 people globally each year. But that fatality rate could prove to be much lower, especially if it turns out that many milder cases have evaded detection.

In the meantime, this much is not in dispute: SARS-CoV-2 spreads easily - more easily than SARS or seasonal flu - and is tough to detect. It's the kind of virus that would be extremely difficult to contain even in a best-case scenario, and the world is hardly in a best-case scenario now. Rising nationalism, waning trust and lingering trade wars have undermined cooperation between global superpowers. Rampant misinformation and growing skepticism of science are imperiling public understanding of the crisis and governments' response to it.

In the United States, a coming general election has politicized what should be a clear public health priority. On Tuesday, Dr. Nancy Messonnier, director of the National Center for Immunization and Respiratory Diseases, warned that a global pandemic was all but inevitable and asked the American public to brace itself for impact. That same day, her boss's boss, President Trump, insisted that everything was well under control.

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Dr. Nancy Messonnier, the director of the National Center for Immunization and Respiratory Diseases (NCIRD), at a news conference in January. Credit... Amanda Voisard/Reuters

Mr. Trump has requested from Congress only $2.5 billion to address Covid-19 - far less than the $15 billion that experts say is needed. He has also made some curious personnel choices in recent days: putting Vice President Mike Pence in charge of the federal response, and muzzling Dr. Anthony Fauci, the long-serving director of the National Institute of Allergy and Infectious Diseases. Dr. Fauci has guided the nation through just about every outbreak and epidemic since 1984, and is widely recognized as one of the world's foremost authorities on managing such crises. As governor of Indiana, Mr. Pence badly botched the response to an H.I.V. outbreak, which resulted in hundreds of preventable infections.

There is still a chance that Covid-19 will prove to be more fire drill than actual fire. A global pandemic is all but certain, but there are many unknowns: Will the virus itself prove to be less contagious or far less deadly than is currently feared? Will it show a tendency to recede in warmer weather the way that seasonal flu does? Can a vaccine be made quickly available? (Dr. Fauci says that one may be ready for testing in as little as two months, and could be commercially available in about a year.) Any of these developments may yet break the global transmission chain, and the vortex of fear and market-tumbling anxiety in which the world now finds itself may yet pass.

If the next few weeks or months bring calm - and scientists increasingly worry that they will not - the world would do well to remember this time what it seems to have forgotten again and again. Another pathogen will emerge soon enough, and another after that. Eventually, one of them will be far worse than all its predecessors. If we are very unlucky, it could be worse than anything in living memory. Imagine something as contagious as measles (which any given infected person passes to 90 percent of the people he or she encounters) only many times more deadly, and you'll have a good sense of what keeps global health officials up at night.

Here's what is certain: Despite many warnings over many years, we are still not ready. Not in China, where nearly two decades after that SARS outbreak food markets that sell live animals still thrive and authoritarianism still undermines honest and accurate communication about infectious diseases. Not in Africa, where basic public health capacity remains hobbled by a lack of investment and, in some cases, by political unrest and violence. Not in the United States, where shortsighted budget cuts and growing nationalism have shrunk commitments to pandemic preparedness, both at home and abroad.

To be sure, some broad progress has been made in the past few years. Vaccine development and deployment now proceed faster than at any point in history. The World Health Organization has corrected many of the institutional shortcomings that thwarted its responses to previous outbreaks. Other countries, in both Europe and Africa, have stepped up to fill the global health leadership position that America appears to have vacated.

But, as Covid-19 makes clear, much more is still needed.

Plan and prepare. The national stockpile has only a fraction of the personal protective equipment that may be needed to respond to Covid-19 - or that would be needed in any pandemic situation. The Food and Drug Administration says that Covid-19-related supply chain disruptions have led to at least one drug shortage already. Public health experts say that more will almost certainly follow. Federal officials, responding directly to the Covid-19 crisis, have also apparently failed to adhere to even the most basic principles of infection control. Americans expect more from their government. Experts have been warning about the importance of proper training, and the need to plan for equipment shortages and supply chain disruptions since at least the anthrax scare of 2001.

Invest in state health departments. They are the front line of every public health emergency, from vaping-related lung illnesses to resurgent syphilis to the opioid epidemic to Covid-19. They are underfunded and deeply strained, and the vast majority of them do not have the capacity to respond to a full-blown pandemic. They cannot do the work of rapid diagnosis and contact tracing, or promote public awareness and combat misinformation in real time, without financial and human resources. A 2019 reauthorization of The Pandemic and All-Hazards Preparedness Act, which includes state-level funding for public health emergencies, was a step in the right direction, but it was not enough to compensate for nearly two decades of steady funding cuts.

Fund federal health agencies. To wage the best fight against any pandemic, the country needs more than vaccines and medical supplies. It needs reliable diagnostics, advanced disease monitoring systems and sensible drug development. One of the most reliable ways to develop those things is through federal research and development. It's disconcerting that for every fiscal year of his presidency so far, Mr. Trump has called for deep cuts to the Centers for Disease Control and Prevention and the National Institutes of Health. He has also scaled back or shut down programs meant to study infectious diseases and prevent outbreaks in developing countries - including ones aimed at finding viruses like Covid-19 before they make the leap to humans.

Forget isolationism. One thing the current moment shows is the folly of presuming that viruses will respect borders - that they can be kept out by walls or wrangled into submission with good intentions. They cannot. Restricting and rescinding foreign health and development aid, pulling global health workers from outbreak zones abroad and undermining health care at home makes Americans more vulnerable to threats like Covid-19.

The best strategy for thwarting this epidemic, and for preventing the next, is to help other nations - wherever they are - fight humanity's common enemy over there before we have to fight it over here.

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Opinion | Here Comes the Coronavirus Pandemic

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Opinion Now, after many fire drills, the world may be facing a real fire. By Back in 2002, when the SARS virus made its fateful leap from bats to civet cats to humans, global health experts warned that the ensuing outbreak was a harbinger of things to come: Climate change and globalization were conspiring with an array of other forces to make it much easier for old animal diseases to morph into new human ones.

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The method involves extracting DNA from a crime scene sample and creating a digital file made up of a few hundred thousand letters of genetic code. That file is then uploaded to GEDMatch, a public warehouse of more than a million voluntarily uploaded DNA files from hobby genealogists trying to find a birth parent or long-lost relative. GEDMatch's algorithms hunt through the database, looking for any shared segments of DNA and adding them up. The more DNA shared between the crime scene sample and any matches, the closer the relationship.

Parabon's genealogists take that list of names and, using public records like the US Census, birth and death certificates, newspaper clippings, and social media, build out family networks that can include many thousands of individuals. They then narrow down the list to a smaller cohort of likely suspects, which they pass on to their law enforcement clients. In both genetic genealogy and familial search, these lists of relatives generated by shared DNA are treated as leads, for police to investigate further using conventional detective work.

It's easy to understand why law enforcement agencies in Maryland would want to halt the bill in its tracks. Last year, Parabon helped police in Montgomery and Anne Arundel Counties arrest suspects in two cold cases-a home invasion that turned deadly and a serial rapist who targeted elderly victims. The company declined to disclose how many open cases it is currently pursuing with the state, saying only that it has working relationships with a number of police departments across Maryland. The cost of each case varies, based on the number of hours Parabon's genealogists put into the search, but on average it runs about $5,000.

Parabon's CEO, Steven Armentrout, who also spoke out against the bill at the hearing last month, suggests that forensic genetic genealogy is no different than police knocking on doors. "A lead is a lead, whether it's generated by a phone tip or security camera footage or a consenting individual in a public DNA database." When police canvas a neighborhood after a crime has taken place, some people will decline to answer, while others will speak freely. Some might speak so freely that they implicate one of their neighbors. "How is this any different?" Armentrout asks.

The difference, say privacy advocates, is that genetic genealogy has the potential to ensnare many more innocent people in a net of police suspicion based solely on their unalterable biology. Today, more than 60 percent of Americans of European ancestry can be identified using open genetic genealogy databases, regardless of whether they've ever consented to a DNA test themselves. Experts estimate it will be only a few years before the same will hold true for everyone residing in the US.

"There isn't anything resembling consent, because the scope of information you can glean from these types of genetic databases is so extensive," says Erin Murphy, a law professor at New York University. Using just a criminal database, a DNA search would merely add up stutters of junk DNA, much like identifying the whorls on a pair of fingerprints. DNA in databases like GEDMatch, however, can tell someone what color eyes you have, or if you have a higher-than-average risk of certain kinds of cancer. The same properties that make that kind of data much more powerful for producing more distant and more accurate kin-relations make it much more sensitive in the hands of police.

Until very recently, GEDMatch was police investigators' only source of consumer DNA data. Companies like 23andMe and Ancestry have policies to rebuff requests by law enforcement. But last week Buzzfeed revealed that another large testing firm, Family Tree DNA, has been working with the FBI since last fall to test crime scene samples. The arrangement marked the first time a commercial company has voluntarily cooperated with authorities. The news came as a shock to Family Tree DNA customers, who were not notified that the company's terms of service had changed.

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Should Cops Use Family Tree Forensics? Maryland Isn't So Sure

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The method involves extracting DNA from a crime scene sample and creating a digital file made up of a few hundred thousand letters of genetic code. That file is then uploaded to GEDMatch, a public warehouse of more than a million voluntarily uploaded DNA files from hobby genealogists trying to find a birth parent or long-lost relative.

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DNA Databases Are Boon to Police But Menace to Privacy, Critics Say

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Launching a new chapter in the fast-moving cancer immunotherapy field, scientists have blended two cutting-edge approaches: CRISPR, which edits DNA, and T cell therapy, in which sentries of the immune system are exploited to destroy tumors. Two women and one man, all in their 60s-one with sarcoma and two with the blood cancer multiple myeloma- received CRISPR-altered versions of their own cells last year, researchers report online in Science this week.

For these pioneers, the benefits were limited: One has since died, and the disease has worsened in the others. But the clinical trial, which underwent years of regulatory scrutiny, wasn't designed to try to cure cancer, says Carl June, a cancer researcher at the University of Pennsylvania (UPenn) who co-led the work. Rather, its goal was to show that the strategy appeared feasible and safe.

By that measure, scientists agree, it succeeded. "This is a Rubicon that has been decisively crossed," says Fyodor Urnov, a genome editor at the University of California (UC), Berkeley. The study, he says, the first of its kind in the United States, answers "questions that have frankly haunted the field."

The researchers used CRISPR alongside another strategy that incorporates new DNA into immune cells. June's team helped pioneer that strategy in 2010, when it added DNA to T cells from three men with chronic leukemia and returned those cells to the patients. The results were remarkable: Two men are still alive and healthy today. Others were testing the same approach, called CAR-T cell therapy-after the inserted chimeric antigen receptor gene that helps the infused T cells latch onto and destroy cancer cells with a specific protein on their surface. Two CAR-T cell therapies are now approved for patients with leukemia and lymphoma.

But with time, the therapy's limitations have come into focus. Not every cancer patient is helped, and even those who are can suffer a relapse, says Edward Stadtmauer, who treats blood cancers at UPenn and co-led the new study. And solid tumors like those in the brain and pancreas have proved tough to treat.

Using CRISPR to knock out selected genes while also adding DNA, it was hoped, might make T cells even more powerful and persistent. But CRISPR brought its own uncertainties. Lab studies have revealed "off-target" effects, in which unintended DNA gets modified. No one knew whether T cells with sliced and diced genes could even survive in the human body. Last year, Vertex Pharmaceuticals and CRISPR Therapeutics announced that two patients treated for inherited blood diseases with CRISPR-edited cells were doing well. But details were sparse.

June, Stadtmauer, and their colleagues began by hunting for patients whose tumors produced a protein called NY-ESO-1, a target for the gene the researchers would add to their T cells. The patients also needed to carry a specific version of human leukocyte antigen, an immune gene complex that could help the infused T cells flourish. The four patients who qualified were all extremely ill, as is the norm for such a novel therapy. A woman with multiple myeloma had undergone three bone marrow transplants. Another, in her late 30s with sarcoma, became too sick to treat while her cells were being prepped in the lab, a process that takes 4 to 6 weeks. She entered hospice care and died.

To try to rev up the patients' T cells against their disease, the scientists used CRISPR to knock out two genes that encode what's known as the T cell receptor. The group also crippled a third gene, for a protein called PD-1. PD-1 puts the brakes on immune responses, and eliminating its effects, June's team theorized, might enrich the T cells' powers. Then, they inserted the gene for a different T cell receptor that would target NY-ESO-1.

Intensive monitoring of the patients, including blood draws to study their altered T cells, confirmed that CRISPR had left some off-target changes. But they were few, and the number of cells with these unintended DNA changes faded over time. Encouragingly, the CRISPR-edited cells persisted at least 9 months-versus about 2 months in comparable CAR-T cell therapy studies. Imaging showed "beautiful, healthy T cells," June says, that in lab studies beat back cancer months after they'd been infused.

But in patients, outcomes were modest. The best response was in the sarcoma patient, whose primary tumor shrank, though his cancer later progressed. "It wasn't like you turned off those genes and those T cells started doing things that were amazing," says Antoni Ribas, an oncologist at UC Los Angeles. Ribas, June, and others offer potential reasons, including the small number of patients treated, possible limitations of NY-ESO-1 as a target-selected in part for its safety record-and the failure to knock out all three genes in many of the cells.

Some of the authors are working with companies to commercialize the method. But much experimentation lies ahead. "This whole area is just teeming with different ideas," Stadtmauer says. A handful of other trials, including several in China, are offering CRISPR-modified cells to patients with cancer or other diseases. A company called PACT Pharma, which Ribas helped found, is running a trial that uses CRISPR to target gene mutations within solid tumors.

What June's group offers is "a needed start" for giving patients CRISPR-edited T cells, Ribas says. From now on, he adds, "It's going to be easier-because they did it first."

doi:10.1126/science.abb1990

More from News

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Cutting-edge CRISPR gene editing appears safe in three cancer patients

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Launching a new chapter in the fast-moving cancer immunotherapy field, scientists have blended two cutting-edge approaches: CRISPR, which edits DNA, and T cell therapy, in which sentries of the immune system are exploited to destroy tumors.

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Gene Editing: Last Week Tonight with John Oliver (HBO)

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The researcher, He Jiankui, offered no evidence or data to back up his assertions. If true, some fear the feat could open the door to "designer babies"

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A microplate from Chinese scientist He Jiankui's lab, containing embryos whose genes have been edited. Dr. He's announcement prompted a statement from a group of 122 scientists condemning his actions as "crazy." Credit Credit Mark Schiefelbein/Associated Press

Ever since scientists created the powerful gene editing technique Crispr, they have braced apprehensively for the day when it would be used to create a genetically altered human being. Many nations banned such work, fearing it could be misused to alter everything from eye color to I.Q.

Now, the moment they feared may have come. On Monday, a scientist in China announced that he had created the world's first genetically edited babies, twin girls who were born this month.

The researcher, He Jiankui, said that he had altered a gene in the embryos, before having them implanted in the mother's womb, with the goal of making the babies resistant to infection with H.I.V. He has not published the research in any journal and did not share any evidence or data that definitively proved he had done it.

But his previous work is known to many experts in the field, who said - many with alarm - that it was entirely possible he had.

"It's scary," said Dr. Alexander Marson, a gene editing expert at the University of California in San Francisco.

While the United States and many other countries have made it illegal to deliberately alter the genes of human embryos, it is not against the law to do so in China, but the practice is opposed by many researchers there. A group of 122 Chinese scientists issued a statement calling Dr. He's actions "crazy" and his claims "a huge blow to the global reputation and development of Chinese science."

If human embryos can be routinely edited, many scientists, ethicists and policymakers fear a slippery slope to a future in which babies are genetically engineered for traits - like athletic or intellectual prowess - that have nothing to do with preventing devastating medical conditions.

While those possibilities might seem far in the future, a different concern is urgent and immediate: safety. The methods used for gene editing can inadvertently alter other genes in unpredictable ways. Dr. He said that did not happen in this case, but it is a worry that looms over the field.

Dr. He made his announcement on the eve of the Second International Summit on Human Genome Editing in Hong Kong, saying that he had recruited several couples in which the man had H.I.V. and then used in vitro fertilization to create human embryos that were resistant to the virus that causes AIDS. He said he did it by directing Crispr-Cas9 to deliberately disable a gene, known as CCR₅, that is used to make a protein H.I.V. needs to enter cells.

Dr. He said the experiment worked for a couple whose twin girls were born in November. He said there were no adverse effects on other genes.

In a video that he posted, Dr. He said the father of the twins has a reason to live now that he has children, and that people with H.I.V. face severe discrimination in China.

In an interview with The Associated Press, he indicated that he hoped to set an example to use genetic editing for valid reasons. "I feel a strong responsibility that it's not just to make a first, but also make it an example," he told the AP. He added: "Society will decide what to do next."

It is highly unusual for a scientist to announce a groundbreaking development without at least providing data that academic peers can review. Dr. He said he had gotten permission to do the work from the ethics board of the hospital Shenzhen Harmonicare, but the hospital, in interviews with Chinese media, denied being involved. The university that he is attached to, the Southern University of Science and Technology, said it suspended Dr. He in February because the school of biology believed that his project "is a serious violation of academic ethics and academic norms," according to the state-run Beijing News.

Many scientists in the United States were appalled.

"I think that's completely insane," said Shoukhrat Mitalipov, director of the Center for Embryonic Cell and Gene Therapy at Oregon Health and Science University. Dr. Mitalipov broke new ground last year by using gene editing to successfully remove a dangerous mutation from human embryos in a laboratory dish.

Dr. Mitalipov said that unlike his own work, which focuses on editing out mutations that cause serious diseases that cannot be prevented any other way, Dr. He did not do anything medically necessary. There are other ways to prevent HIV infection in newborns.

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Dr. He said his experiment on the twin girls' HIV genes had no adverse effects, but he did not provide any evidence or data to back up his claims. Credit Mark Schiefelbein/Associated Press

Just three months ago, at a conference in late August on genome engineering at Cold Spring Harbor Laboratory in New York, Dr. He presented work on editing the CCR₅ gene in the embryos of nine couples.

At the conference, whose organizers included Jennifer Doudna, one of the inventors of Crispr technology, Dr. He gave a careful talk about something that fellow attendees considered squarely within the realm of ethically approved research, said one of those who attended, Dr. Fyodor Urnov, deputy director of the Altius Institute for Biomedical Sciences and a visiting researcher at the Innovative Genomics Institute at the University of California, Berkeley.

"If you listened to his talk, it is this very cautious, thoughtful, step-by-step advance," Dr. Urnov said. "He presented embryo editing of CCR₅. He was presenting the talk to peers, professional gene editors who know that the field is advancing rapidly, so frankly the atmosphere in the room was, I don't want to say ho-hum, but it was 'Yeah, sure, you've built on ten years of advances.'"

"What we now know is that as he was talking, there was a woman in China carrying twins," Dr. Urnov said. "He had the opportunity to say 'Oh and by the way, I'm just going to come out and say it, people, there's a woman carrying twins.'"

He didn't. "I would never play poker against Dr. He," Dr. Urnov said.

Richard Hynes, a cancer researcher at the Massachusetts Institute of Technology, who co-led an advisory group on human gene editing for the National Academy of Sciences and the National Academy of Medicine, said that group and a similar organization in Britain had determined that if human genes were to be edited, the procedure should only be done to address "serious unmet needs in medical treatment, it had to be well monitored, it had to be well followed up, full consent has to be in place."

It is not clear why altering genes to make people resistant to H.I.V. is "a serious unmet need." Men with H.I.V. do not infect embryos. Their semen contains the virus that causes AIDS, which can infect women, but the virus can be washed off their sperm before insemination. Or a doctor can inject a single sperm into an egg. In either case, the woman will not be infected and neither will the babies.

Dr. He got his Ph.D, from Rice University, in physics and his postdoctoral training, at Stanford, was with Stephen Quake, a professor of bioengineering and applied physics who works on sequencing DNA, not editing it.

Experts said that using Crispr would actually be quite easy for someone like Dr. He.

After coming to Shenzhen in 2012, Dr. He, at age 28, established a DNA sequencing company, Direct Genomics, and listed Dr. Quake on its advisory board. But, in a telephone interview on Monday, Dr. Quake said he was never associated with the company.

-- Austin Ramzy contributed reporting from Hong Kong and Elsie Chen contributed research from Beijing.

Gina Kolata writes about science and medicine. She has twice been a Pulitzer Prize finalist and is the author of six books, including "Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and The Science That Saved Them." @ginakolata * Facebook

Sui-Lee Wee has been a correspondent for The New York Times in the Beijing bureau since October 2016. She covers business in China, Chinese consumers, health care and the intersection of demographics and the economy. @suilee

Pam Belluck is a health and science writer. She was one of seven Times staffers awarded the 2015 Pulitzer Prize for International Reporting for coverage of the Ebola epidemic. She is the author of "Island Practice," about a colorful and contrarian doctor on Nantucket. @PamBelluck

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Chinese Scientist Claims to Use Crispr to Make First Genetically Edited Babies

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The researcher, He Jiankui, offered no evidence or data to back up his assertions. If true, some fear the feat could open the door to "designer babies" Ever since scientists created the powerful gene editing technique Crispr, they have braced apprehensively for the day when it would be used to create a genetically altered human being.

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Bioethics in Practice: The Baby Wears Prada: Bioethics of Designer Babies

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Bioethics in Practice: The Baby Wears Prada: Bioethics of Designer Babies

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Imagine a world where a baby's genetic composition is no longer a product of chance; where parents can select or even alter embryos to fit their preferred specifications. With the advent of technology like in-vitro fertilization (IVF), preimplantation genetic screening (PGS) and powerful and precise gene editing tools like CRISPR, this world, once found only in science fiction novels, looms exciting and unnerving just over the medical horizon.

Colloquially referred to as "designer babies," this concept admittedly evokes the unsettling image of vapid parents sitting in a cushy doctor's office with indulgent requests like "make sure she has blue eyes like her mother." However, despite its shallow connotations, the medical technology behind designer babies has the potential to revolutionize healthcare. Scientists believe that it may allow doctors to prevent and even eradicate certain incurable diseases, instead of just treating their symptoms.

This possibility is not as removed from our reality as we may think. PGS, which involves screening embryos for genetic diseases before implanting them via IVF, is already legal and has been used successfully in the United States and many European countries. And though germline genetic modification, which involves direct gene editing in developing embryos, is completely illegal in the United States and over 40 other countries, clinical trials involving the practice have been conducted in China since 2015, sparking international outrage and debate. In November 2018, MIT Technology Review reported findings of Chinese documents describing a clinical trial intending to genetically modify embryos and implant them via IVF. According to the Review, " [These scientists] planned to eliminate a gene called CCR5 in hopes of rendering the offspring resistant to HIV, smallpox and cholera. "

As with all advances in biotechnology, it is important to weigh the pros and cons, and explore the ethical implications of both sides. To evaluate this complex issue, this article will examine the parties involved:

The embryo: At the crux of this issue lies, of course, the embryo, and the person that that embryo could become. One obvious benefit for the embryo would be health-related, in which case one must weigh the health benefits and risks associated with the various methods used to create designer babies.

PGS is one method which is minimally invasive and low-risk. It involves screening embryos to make sure that they are genetically healthy before implanting them via IVF. This is especially important for children born to parents who are at a high risk for passing down genetic disorders, like many individuals within the Jewish population.

Germline genetic modification, which involves altering the embryo's genetic code, also has tremendous potential to prevent disease. However, the procedure would be much more invasive and complex, and poses an important question: can we reach a high enough level of confidence in the safety of these procedures that we can feel comfortable trying them on actual humans? Gene mapping provides some insight into the traits associated with certain genes, but is still a developing field. Genes are highly complex, interacting in ways that are difficult to predict; at least for now, we cannot account for every consequence that would result from editing an area of genetic code. Even a single unforeseen consequence could be debilitating to the child, and, if heritable, to the child's descendants.

Another factor to consider on the embryo's behalf is the possibility of selecting or altering embryos in favor of certain desirable qualities unrelated to health. As gene mapping becomes more nuanced, scientists have attempted to pinpoint genes that influence intelligence, athletic ability and physical characteristics like height and weight.

A number of issues could arise from parents choosing to improve their child in this way. One potential issue lies in the subjectivity of the word "improve." What determines whether a quality is considered positive and constitutes an improvement? In a recent case, a deaf lesbian couple elected to use a deaf sperm donor to have a child, intentionally maximizing the chances that their child would be deaf. The couple said that they were part of a deaf community and culture, and did not want their child to feel isolated and cut off from that. Their baby was not technically a designer baby, but what if it was? Should parents be allowed to bestow on their children whatever qualities they consider meritorious, if there is no objective way to evaluate these qualities? This brings us to...

The parents: Every parent wants to do what they deem best for their child. In the U.S., medically speaking, this is largely within a parent's right. American law does not consider a child competent to make medical decisions and considers the parent responsible for the child's health and wellbeing. For this reason, a parent is allowed to vaccinate his or her child against dangerous diseases, have their broken leg set in a cast and have their inflamed appendix removed, even if the child protests. One might apply this logic to the issue of designer babies, and say that it does not matter that an embryo obviously cannot consent to genetic modification; a parent has the right to make a decision that will save their child from a dangerous disease.

However, this logic does not apply for elective medical procedures. A parent cannot force a child to get a cosmetic surgery, even if they think it is in the child's best interest. Therefore, one could argue that a parent should not be allowed to alter a child's natural genetic makeup for superficial or cosmetic reasons without their consent.

Society at large: One last factor to consider is the impact that designer babies could have on the global population. Overall, the proliferation of designer babies would likely result in a greater percentage of the population being more intelligent, physically fit and free of disease. This seems like a benefit; however, there is a darker side to consider. Firstly, this could lead to a more genetically homogenous population, with parents favoring genes in line with desirable or "in vogue" traits. Genetic diversity is very important since it renders different people resistant to different types of diseases and threats, which prevents a single cause from being able to wipe out entire populations.

Additionally, treatment to select or alter embryos would likely be expensive. This could increase the disparity between wealthier and poorer classes, creating an upper class that is smarter, stronger and otherwise could be considered "genetically superior." This would make it much more difficult for members of poorer classes to achieve upwards social mobility. Even more alarmingly, it could pave the road for a culture of eugenics, a social philosophy which favors promoting populations with genetic superiority and reducing those with genetic inferiority.

So in summation, should designer babies be legalized? Obviously, there is no simple answer. When thinking of worst case scenarios - violations of medical autonomy, debilitating heritable mutations and a whole host of societal inequities - it may be tempting to keep this Pandora's box safely shut. But when one considers the possibility of extraordinary good - the eradication of diseases, advancement of humanity and other benefits that we, in our narrow scope of vision, can't even begin to imagine - the prospect of leaving this area of medicine unexplored can feel, at the very least, anticlimactic.

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Photo caption: Are we entering an era of designer babies? Photo credit: Genetic Literacy Project

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Bioethics in Practice: The Baby Wears Prada: Bioethics of Designer Babies - The Commentator

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Imagine a world where a baby's genetic composition is no longer a product of chance; where parents can select or even alter embryos to fit their preferred specifications. With the advent of technology like in-vitro fertilization (IVF), preimplantation genetic screening (PGS) and powerful and precise gene editing tools like CRISPR, this world, once found only ...

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Scattered around your house or apartment, lightly coating the surface of your coffee table and lurking in the nooks and crannies of each room, are millions of your skin and hair cells. There are so many, you likely don't even notice them, or feel any ownership over these lost biological bits of yourself. But what if someone came into your house and took them?

A cell is the fundamental unit of life - machinery to respond to external stimuli, replicate, and eat are all packaged within this tiny membranous bundle. Within a particular sub-compartment called the nucleus, DNA, the genetic sequence that codes for cellular material in your entire body, is kept. Cells come together to form tissues, organs, and full organisms, with humans composed of an arrangement of trillions of coordinated cells of many types: muscle, hair, skin, nerve, muscle... the list goes on and on. Research on particular cell types, obtained from human samples and cultured in labs, has advanced scientists' understanding of human health and disease from cancers to autoimmune and neurodegenerative diseases.

This slightly changes our question: if a scientist had your cells, would you care? Would you hand over this discarded part of yourself for the greater good? And are these cells even yours in the first place?
Setting legal grounds
Back in the mid-1950s, a patient with cervical cancer had her tumor biopsied to make a diagnosis. To try and understand cancer, these abstracted cells were kept and cultured. Unlike those studied before, these cells never died - previous cell samples would wither and stop replicating after a few weeks or months, making long-term studies on tissues difficult. But these cells had a particular cancerous mutation that allowed them to flourish. Named after the African American woman they were obtained from, Henrietta Lacks, this cell line - "HeLa," as it is abbreviated - is still used for medical research today. However, neither Henrietta nor any of her family members consented to the prolonged use of her cells. As such, the past 60 years or so of research, including the development of the polio vaccine, relied on the cervical cells taken from an uninformed and underprivileged patient. It wasn't until 20 years after Henrietta's death that her family was finally flooded with the news that, while she was dead, her cells were alive. Not only that, companies were mass producing her cells and distributing them across the globe for a huge profit without the Lackses seeing a single penny.

NIH

Henrietta and her family are not the only ones who have encountered ambiguity in cellular ownership. In the mid-1970s, John Moore suffered from hairy-cell leukemia, a rare form of cancer where white blood cells grow hair-like projections. Part of the cancer's pathology caused his spleen, an organ responsible for recycling worn-out blood cells that's typically on the order of one pound, to enlarge to 14 pounds, clogged with hairy white blood cells. As in Henrietta's case, a surgeon removed his cancerous cells to study the mutated pathway causing this unique cancer, naming and patenting John Moore's cell line "Mo cells." But unlike Henrietta's disease, John's went into remission and after the surgery, he sued his doctor for failing to obtain informed consent.

Property rights in these cases are not straightforward, however. Even though in both of these incidents the cells themselves were taken under false pretenses, the subsequent research and intellectual property derived from the cells is neither Henrietta's nor John's. Using ends to justify the means, the proceedings from the studies only occurred because of the research, and not the cells on their own. Especially since both cancerous HeLa and Mo lines have been duplicated trillions of times since first being removed, the original cells don't exist anymore anyway because they have divided and replicated.

Who owns genetic content like DNA?

That said, the genetic material contained in the nucleus originated from their cells and is unique to them. This doesn't change the conversation, but it switches the question again, slightly: who owns genetic content like DNA?
Mining your personal code
Genetic companies, popular with people looking for clues into their family histories, collect and analyze participants' data from their DNA to perform their service. Most of these test kits require just a cotton swab of the inside of your cheek, which collects enough cells to be able to determine your genetic code. Within paperwork involved to obtain and use some kits, whether or not you read and understood the terms and conditions, you give consent to have your results archived and cataloged. This results in your unnamed information and identity plastered on databases for their contents to be mined and hauled by big data analytics.

While the knowledge that one's biological identity is openly available unnerves many, the accessible records are often used for good. Massively mining genetic content is used for prognostic diagnostics and to identify global health trends. Through pattern-matching, genetic sequencing companies have a chance of finding causes and markers of disease which could lead to early diagnosis and treatment or prevention. For example, if you sequenced your DNA, it could be compared with others' in the databank to determine risk for cancer or diabetes. Big data analytics can be used to improve healthcare, disease treatment, and quality of care with analytic algorithms and data modeling.

Photo by Drew Hays

Along with health-related uses, genetic data is frequently used in a forensic context, where DNA evidence is used to identify criminals. Big genetics data is a new method recently used to find California's Golden State Killer, who was at large in the '70s and '80s. Evidence from the cold case contained discarded materials with traces of the killer's DNA. Screening this against archived genomes, there was a familial match that led the police to find and arrest the guilty Joseph DeAngelo. While the conviction is viewed as a success, having finally ended a hunt of a man who killed or abused more than 50 people across California, it still raises the same serious questions about civil liberty and ownership of one's cells and genetic content.
Having the right to know
From Lacks' cells to commercially available genetic kits, ownership comes down to knowing when your biological property is available to be legally owned by someone else, and having the informed consent to share it. In a time when African American patients, particularly female ones, were treated poorly in mid-1950s Baltimore, Lacks' impoverished family was unfortunately not given any information concerning the location of HeLa cells, let alone any clues to her death; most members of her family were not even told what a cell is. In the cases of both HeLa and Mo cells, neither person was aware of the potential commercial applications of the subsequent cell line. Instead, hospitals and industries made millions off of maintaining cell cultures of the replicated human cells, with one vial of cells selling for hundreds to thousands of dollars each. During the Golden State Killer case, it's been made clear that genetic profiling of an individual can occur even without their DNA. If one of your relatives spits into a vial for sequencing they are giving up a bit of your own genetic information, along with theirs, without your consent.

Sierra Nishizaki

Still, courts favor the idea that biological content does not belong to the individual. The Lackses have not been compensated for Henrietta's cells by the hospitals, though grants through a private foundation have gone to family members' healthcare and education. Additionally, the United States Supreme Court ruled in 1990 that Moore's discarded samples were not his personal possession. Though new guidelines surrounding biological property have been created, laws around genetic data that favor privacy are still lacking. For example, a recent ruling in California following the Golden State Killer case supported law enforcement's ability to use DNA databases to solve cold cases.

A significant point of contention is the commercialization of cell lines or other biological samples taken from patients. When hospitals or research institutions make on the order of a hundred dollars per sample sold, people like Moore and the Lackses feel as though they've been conned out of their potential. In the late 1990's, the Council of Europe constructed a treaty to protect against the misuse of biological and medical advances, stating that a biological sample taken from a patient "may be stored and used for a purpose other than that for which it was removed, only if this is done in conformity with appropriate information and consent procedure." This includes samples like tissues, organs, and blood, but not of hair, nails, or skin. Similarly, the American Medical Association requires physicians contemplating the commercial use of human tissue to disclose applications of the sample to the patient, and suggests they share profits from commercialization. That said, this requirement isn't enforced by any laws and so is more of a suggested guideline.

Along with monetary gains, cells and DNA have another significant value: data. Biological data has a significant impact on global health trends, criminology, and personal diagnostics. With that comes the potential for your data to be used against you. Some companies like 23&Me are at least making it clear that "genetic information you share with others could be used against your interests," as they warn in their terms of service, sounding very much like Miranda rights. This type of explicit wording had previously been absent, leading to decades of uninformed consent. Especially with personal data being mined continuously with the growing use of wearable devices like FitBits that track biological information from activity, to sleep, to diet, there's increasing need for users to understand where and how that data is being used. Some insurance companies are even asking for that data with the claim that it'll help lower rates - but what if your data shows that you have a preexisting condition or aren't perfectly healthy? Will that impact your insurance?

With stakes high on both sides, either your biological data could be used to help treat diseases and catch a killer or used by health insurance companies to increase rates, at the very least people should know what they - and their cells - are getting themselves into.
A version of this story appeared on MiSciWriters.

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Scattered around your house or apartment, lightly coating the surface of your coffee table and lurking in the nooks and crannies of each room, are millions of your skin and hair cells. There are so many, you likely don't even notice them, or feel any ownership over these lost biological bits of yourself.

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Against Designer Babies

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Breakthroughs in genetics present us with a promise and a predicament. The promise is that we may soon be able to treat and prevent a host of debilitating diseases. The predicament is that our newfound genetic knowledge may also enable us to manipulate our own nature-to enhance our muscles, memories, and moods; to choose the sex, height, and other genetic traits of our children; to make ourselves "better than well." When science moves faster than moral understanding, as it does today, men and women struggle to articulate their unease. In liberal societies they reach first for the language of autonomy, fairness, and individual rights. But this part of our moral vocabulary is ill equipped to address the hardest questions posed by genetic engineering. The genomic revolution has induced a kind of moral vertigo.

Consider cloning. The birth of Dolly the cloned sheep, in 1997, brought a torrent of concern about the prospect of cloned human beings. There are good medical reasons to worry. Most scientists agree that cloning is unsafe, likely to produce offspring with serious abnormalities. (Dolly recently died a premature death.) But suppose technology improved to the point where clones were at no greater risk than naturally conceived offspring. Would human cloning still be objectionable? Should our hesitation be moral as well as medical? What, exactly, is wrong with creating a child who is a genetic twin of one parent, or of an older sibling who has tragically died-or, for that matter, of an admired scientist, sports star, or celebrity?

Some say cloning is wrong because it violates the right to autonomy: by choosing a child's genetic makeup in advance, parents deny the child's right to an open future. A similar objection can be raised against any form of bioengineering that allows parents to select or reject genetic characteristics. According to this argument, genetic enhancements for musical talent, say, or athletic prowess, would point children toward particular choices, and so designer children would never be fully free.

At first glance the autonomy argument seems to capture what is troubling about human cloning and other forms of genetic engineering. It is not persuasive, for two reasons. First, it wrongly implies that absent a designing parent, children are free to choose their characteristics for themselves. But none of us chooses his genetic inheritance. The alternative to a cloned or genetically enhanced child is not one whose future is unbound by particular talents but one at the mercy of the genetic lottery.

Second, even if a concern for autonomy explains some of our worries about made-to-order children, it cannot explain our moral hesitation about people who seek genetic remedies or enhancements for themselves. Gene therapy on somatic (that is, nonreproductive) cells, such as muscle cells and brain cells, repairs or replaces defective genes. The moral quandary arises when people use such therapy not to cure a disease but to reach beyond health, to enhance their physical or cognitive capacities, to lift themselves above the norm.

Like cosmetic surgery, genetic enhancement employs medical means for nonmedical ends-ends unrelated to curing or preventing disease or repairing injury. But unlike cosmetic surgery, genetic enhancement is more than skin-deep. If we are ambivalent about surgery or Botox injections for sagging chins and furrowed brows, we are all the more troubled by genetic engineering for stronger bodies, sharper memories, greater intelligence, and happier moods. The question is whether we are right to be troubled, and if so, on what grounds.

In order to grapple with the ethics of enhancement, we need to confront questions largely lost from view-questions about the moral status of nature, and about the proper stance of human beings toward the given world. Since these questions verge on theology, modern philosophers and political theorists tend to shrink from them. But our new powers of biotechnology make them unavoidable. To see why this is so, consider four examples already on the horizon: muscle enhancement, memory enhancement, growth-hormone treatment, and reproductive technologies that enable parents to choose the sex and some genetic traits of their children. In each case what began as an attempt to treat a disease or prevent a genetic disorder now beckons as an instrument of improvement and consumer choice.

Muscles. Everyone would welcome a gene therapy to alleviate muscular dystrophy and to reverse the debilitating muscle loss that comes with old age. But what if the same therapy were used to improve athletic performance? Researchers have developed a synthetic gene that, when injected into the muscle cells of mice, prevents and even reverses natural muscle deterioration. The gene not only repairs wasted or injured muscles but also strengthens healthy ones. This success bodes well for human applications. H. Lee Sweeney, of the University of Pennsylvania, who leads the research, hopes his discovery will cure the immobility that afflicts the elderly. But Sweeney's bulked-up mice have already attracted the attention of athletes seeking a competitive edge. Although the therapy is not yet approved for human use, the prospect of genetically enhanced weight lifters, home-run sluggers, linebackers, and sprinters is easy to imagine. The widespread use of steroids and other performance-improving drugs in professional sports suggests that many athletes will be eager to avail themselves of genetic enhancement.

Suppose for the sake of argument that muscle-enhancing gene therapy, unlike steroids, turned out to be safe-or at least no riskier than a rigorous weight-training regimen. Would there be a reason to ban its use in sports? There is something unsettling about the image of genetically altered athletes lifting SUVs or hitting 650-foot home runs or running a three-minute mile. But what, exactly, is troubling about it? Is it simply that we find such superhuman spectacles too bizarre to contemplate? Or does our unease point to something of ethical significance?

It might be argued that a genetically enhanced athlete, like a drug-enhanced athlete, would have an unfair advantage over his unenhanced competitors. But the fairness argument against enhancement has a fatal flaw: it has always been the case that some athletes are better endowed genetically than others, and yet we do not consider this to undermine the fairness of competitive sports. From the standpoint of fairness, enhanced genetic differences would be no worse than natural ones, assuming they were safe and made available to all. If genetic enhancement in sports is morally objectionable, it must be for reasons other than fairness.

Memory. Genetic enhancement is possible for brains as well as brawn. In the mid-1990s scientists managed to manipulate a memory-linked gene in fruit flies, creating flies with photographic memories. More recently researchers have produced smart mice by inserting extra copies of a memory-related gene into mouse embryos. The altered mice learn more quickly and remember things longer than normal mice. The extra copies were programmed to remain active even in old age, and the improvement was passed on to offspring.

Human memory is more complicated, but biotech companies, including Memory Pharmaceuticals, are in hot pursuit of memory-enhancing drugs, or "cognition enhancers," for human beings. The obvious market for such drugs consists of those who suffer from Alzheimer's and other serious memory disorders. The companies also have their sights on a bigger market: the 81 million Americans over fifty, who are beginning to encounter the memory loss that comes naturally with age. A drug that reversed age-related memory loss would be a bonanza for the pharmaceutical industry: a Viagra for the brain. Such use would straddle the line between remedy and enhancement. Unlike a treatment for Alzheimer's, it would cure no disease; but insofar as it restored capacities a person once possessed, it would have a remedial aspect. It could also have purely nonmedical uses: for example, by a lawyer cramming to memorize facts for an upcoming trial, or by a business executive eager to learn Mandarin on the eve of his departure for Shanghai.

Some who worry about the ethics of cognitive enhancement point to the danger of creating two classes of human beings: those with access to enhancement technologies, and those who must make do with their natural capacities. And if the enhancements could be passed down the generations, the two classes might eventually become subspecies-the enhanced and the merely natural. But worry about access ignores the moral status of enhancement itself. Is the scenario troubling because the unenhanced poor would be denied the benefits of bioengineering, or because the enhanced affluent would somehow be dehumanized? As with muscles, so with memory: the fundamental question is not how to ensure equal access to enhancement but whether we should aspire to it in the first place.

Height. Pediatricians already struggle with the ethics of enhancement when confronted by parents who want to make their children taller. Since the 1980s human growth hormone has been approved for children with a hormone deficiency that makes them much shorter than average. But the treatment also increases the height of healthy children. Some parents of healthy children who are unhappy with their stature (typically boys) ask why it should make a difference whether a child is short because of a hormone deficiency or because his parents happen to be short. Whatever the cause, the social consequences are the same.

In the face of this argument some doctors began prescribing hormone treatments for children whose short stature was unrelated to any medical problem. By 1996 such "off-label" use accounted for 40 percent of human-growth-hormone prescriptions. Although it is legal to prescribe drugs for purposes not approved by the Food and Drug Administration, pharmaceutical companies cannot promote such use. Seeking to expand its market, Eli Lilly & Co. recently persuaded the FDA to approve its human growth hormone for healthy children whose projected adult height is in the bottom one percentile-under five feet three inches for boys and four feet eleven inches for girls. This concession raises a large question about the ethics of enhancement: If hormone treatments need not be limited to those with hormone deficiencies, why should they be available only to very short children? Why shouldn't all shorter-than-average children be able to seek treatment? And what about a child of average height who wants to be taller so that he can make the basketball team?

Some oppose height enhancement on the grounds that it is collectively self-defeating; as some become taller, others become shorter relative to the norm. Except in Lake Wobegon, not every child can be above average. As the unenhanced began to feel shorter, they, too, might seek treatment, leading to a hormonal arms race that left everyone worse off, especially those who couldn't afford to buy their way up from shortness.

But the arms-race objection is not decisive on its own. Like the fairness objection to bioengineered muscles and memory, it leaves unexamined the attitudes and dispositions that prompt the drive for enhancement. If we were bothered only by the injustice of adding shortness to the problems of the poor, we could remedy that unfairness by publicly subsidizing height enhancements. As for the relative height deprivation suffered by innocent bystanders, we could compensate them by taxing those who buy their way to greater height. The real question is whether we want to live in a society where parents feel compelled to spend a fortune to make perfectly healthy kids a few inches taller.

Sex selection. Perhaps the most inevitable nonmedical use of bioengineering is sex selection. For centuries parents have been trying to choose the sex of their children. Today biotech succeeds where folk remedies failed.

One technique for sex selection arose with prenatal tests using amniocentesis and ultrasound. These medical technologies were developed to detect genetic abnormalities such as spina bifida and Down syndrome. But they can also reveal the sex of the fetus-allowing for the abortion of a fetus of an undesired sex. Even among those who favor abortion rights, few advocate abortion simply because the parents do not want a girl. Nevertheless, in traditional societies with a powerful cultural preference for boys, this practice has become widespread.

Sex selection need not involve abortion, however. For couples undergoing in vitro fertilization (IVF), it is possible to choose the sex of the child before the fertilized egg is implanted in the womb. One method makes use of pre-implantation genetic diagnosis (PGD), a procedure developed to screen for genetic diseases. Several eggs are fertilized in a petri dish and grown to the eight-cell stage (about three days). At that point the embryos are tested to determine their sex. Those of the desired sex are implanted; the others are typically discarded. Although few couples are likely to undergo the difficulty and expense of IVF simply to choose the sex of their child, embryo screening is a highly reliable means of sex selection. And as our genetic knowledge increases, it may be possible to use PGD to cull embryos carrying undesired genes, such as those associated with obesity, height, and skin color. The science-fiction movie Gattaca depicts a future in which parents routinely screen embryos for sex, height, immunity to disease, and even IQ. There is something troubling about the Gattaca scenario, but it is not easy to identify what exactly is wrong with screening embryos to choose the sex of our children.

One line of objection draws on arguments familiar from the abortion debate. Those who believe that an embryo is a person reject embryo screening for the same reasons they reject abortion. If an eight-cell embryo growing in a petri dish is morally equivalent to a fully developed human being, then discarding it is no better than aborting a fetus, and both practices are equivalent to infanticide. Whatever its merits, however, this "pro-life" objection is not an argument against sex selection as such.

The latest technology poses the question of sex selection unclouded by the matter of an embryo's moral status. The Genetics & IVF Institute, a for-profit infertility clinic in Fairfax, Virginia, now offers a sperm-sorting technique that makes it possible to choose the sex of one's child before it is conceived. X-bearing sperm, which produce girls, carry more DNA than Y-bearing sperm, which produce boys; a device called a flow cytometer can separate them. The process, called MicroSort, has a high rate of success.

If sex selection by sperm sorting is objectionable, it must be for reasons that go beyond the debate about the moral status of the embryo. One such reason is that sex selection is an instrument of sex discrimination-typically against girls, as illustrated by the chilling sex ratios in India and China. Some speculate that societies with substantially more men than women will be less stable, more violent, and more prone to crime or war. These are legitimate worries-but the sperm-sorting company has a clever way of addressing them. It offers MicroSort only to couples who want to choose the sex of a child for purposes of "family balancing." Those with more sons than daughters may choose a girl, and vice versa. But customers may not use the technology to stock up on children of the same sex, or even to choose the sex of their firstborn child. (So far the majority of MicroSort clients have chosen girls.) Under restrictions of this kind, do any ethical issues remain that should give us pause?

The case of MicroSort helps us isolate the moral objections that would persist if muscle-enhancement, memory-enhancement, and height-enhancement technologies were safe and available to all.

It is commonly said that genetic enhancements undermine our humanity by threatening our capacity to act freely, to succeed by our own efforts, and to consider ourselves responsible-worthy of praise or blame-for the things we do and for the way we are. It is one thing to hit seventy home runs as the result of disciplined training and effort, and something else, something less, to hit them with the help of steroids or genetically enhanced muscles. Of course, the roles of effort and enhancement will be a matter of degree. But as the role of enhancement increases, our admiration for the achievement fades-or, rather, our admiration for the achievement shifts from the player to his pharmacist. This suggests that our moral response to enhancement is a response to the diminished agency of the person whose achievement is enhanced.

Though there is much to be said for this argument, I do not think the main problem with enhancement and genetic engineering is that they undermine effort and erode human agency. The deeper danger is that they represent a kind of hyperagency-a Promethean aspiration to remake nature, including human nature, to serve our purposes and satisfy our desires. The problem is not the drift to mechanism but the drive to mastery. And what the drive to mastery misses and may even destroy is an appreciation of the gifted character of human powers and achievements.

To acknowledge the giftedness of life is to recognize that our talents and powers are not wholly our own doing, despite the effort we expend to develop and to exercise them. It is also to recognize that not everything in the world is open to whatever use we may desire or devise. Appreciating the gifted quality of life constrains the Promethean project and conduces to a certain humility. It is in part a religious sensibility. But its resonance reaches beyond religion.

It is difficult to account for what we admire about human activity and achievement without drawing upon some version of this idea. Consider two types of athletic achievement. We appreciate players like Pete Rose, who are not blessed with great natural gifts but who manage, through striving, grit, and determination, to excel in their sport. But we also admire players like Joe DiMaggio, who display natural gifts with grace and effortlessness. Now, suppose we learned that both players took performance-enhancing drugs. Whose turn to drugs would we find more deeply disillusioning? Which aspect of the athletic ideal-effort or gift-would be more deeply offended?

Some might say effort: the problem with drugs is that they provide a shortcut, a way to win without striving. But striving is not the point of sports; excellence is. And excellence consists at least partly in the display of natural talents and gifts that are no doing of the athlete who possesses them. This is an uncomfortable fact for democratic societies. We want to believe that success, in sports and in life, is something we earn, not something we inherit. Natural gifts, and the admiration they inspire, embarrass the meritocratic faith; they cast doubt on the conviction that praise and rewards flow from effort alone. In the face of this embarrassment we inflate the moral significance of striving, and depreciate giftedness. This distortion can be seen, for example, in network-television coverage of the Olympics, which focuses less on the feats the athletes perform than on heartrending stories of the hardships they have overcome and the struggles they have waged to triumph over an injury or a difficult upbringing or political turmoil in their native land.

But effort isn't everything. No one believes that a mediocre basketball player who works and trains even harder than Michael Jordan deserves greater acclaim or a bigger contract. The real problem with genetically altered athletes is that they corrupt athletic competition as a human activity that honors the cultivation and display of natural talents. From this standpoint, enhancement can be seen as the ultimate expression of the ethic of effort and willfulness-a kind of high-tech striving. The ethic of willfulness and the biotechnological powers it now enlists are arrayed against the claims of giftedness.

The ethic of giftedness, under siege in sports, persists in the practice of parenting. But here, too, bioengineering and genetic enhancement threaten to dislodge it. To appreciate children as gifts is to accept them as they come, not as objects of our design or products of our will or instruments of our ambition. Parental love is not contingent on the talents and attributes a child happens to have. We choose our friends and spouses at least partly on the basis of qualities we find attractive. But we do not choose our children. Their qualities are unpredictable, and even the most conscientious parents cannot be held wholly responsible for the kind of children they have. That is why parenthood, more than other human relationships, teaches what the theologian William F. May calls an "openness to the unbidden."

May's resonant phrase helps us see that the deepest moral objection to enhancement lies less in the perfection it seeks than in the human disposition it expresses and promotes. The problem is not that parents usurp the autonomy of a child they design. The problem lies in the hubris of the designing parents, in their drive to master the mystery of birth. Even if this disposition did not make parents tyrants to their children, it would disfigure the relation between parent and child, and deprive the parent of the humility and enlarged human sympathies that an openness to the unbidden can cultivate.

To appreciate children as gifts or blessings is not, of course, to be passive in the face of illness or disease. Medical intervention to cure or prevent illness or restore the injured to health does not desecrate nature but honors it. Healing sickness or injury does not override a child's natural capacities but permits them to flourish.

Nor does the sense of life as a gift mean that parents must shrink from shaping and directing the development of their child. Just as athletes and artists have an obligation to cultivate their talents, so parents have an obligation to cultivate their children, to help them discover and develop their talents and gifts. As May points out, parents give their children two kinds of love: accepting love and transforming love. Accepting love affirms the being of the child, whereas transforming love seeks the well-being of the child. Each aspect corrects the excesses of the other, he writes: "Attachment becomes too quietistic if it slackens into mere acceptance of the child as he is." Parents have a duty to promote their children's excellence.

These days, however, overly ambitious parents are prone to get carried away with transforming love-promoting and demanding all manner of accomplishments from their children, seeking perfection. "Parents find it difficult to maintain an equilibrium between the two sides of love," May observes. "Accepting love, without transforming love, slides into indulgence and finally neglect. Transforming love, without accepting love, badgers and finally rejects." May finds in these competing impulses a parallel with modern science: it, too, engages us in beholding the given world, studying and savoring it, and also in molding the world, transforming and perfecting it.

The mandate to mold our children, to cultivate and improve them, complicates the case against enhancement. We usually admire parents who seek the best for their children, who spare no effort to help them achieve happiness and success. Some parents confer advantages on their children by enrolling them in expensive schools, hiring private tutors, sending them to tennis camp, providing them with piano lessons, ballet lessons, swimming lessons, SAT-prep courses, and so on. If it is permissible and even admirable for parents to help their children in these ways, why isn't it equally admirable for parents to use whatever genetic technologies may emerge (provided they are safe) to enhance their children's intelligence, musical ability, or athletic prowess?

The defenders of enhancement are right to this extent: improving children through genetic engineering is similar in spirit to the heavily managed, high-pressure child-rearing that is now common. But this similarity does not vindicate genetic enhancement. On the contrary, it highlights a problem with the trend toward hyperparenting. One conspicuous example of this trend is sports-crazed parents bent on making champions of their children. Another is the frenzied drive of overbearing parents to mold and manage their children's academic careers.

As the pressure for performance increases, so does the need to help distractible children concentrate on the task at hand. This may be why diagnoses of attention deficit and hyperactivity disorder have increased so sharply. Lawrence Diller, a pediatrician and the author of Running on Ritalin, estimates that five to six percent of American children under eighteen (a total of four to five million kids) are currently prescribed Ritalin, Adderall, and other stimulants, the treatment of choice for ADHD. (Stimulants counteract hyperactivity by making it easier to focus and sustain attention.) The number of Ritalin prescriptions for children and adolescents has tripled over the past decade, but not all users suffer from attention disorders or hyperactivity. High school and college students have learned that prescription stimulants improve concentration for those with normal attention spans, and some buy or borrow their classmates' drugs to enhance their performance on the SAT or other exams. Since stimulants work for both medical and nonmedical purposes, they raise the same moral questions posed by other technologies of enhancement.

However those questions are resolved, the debate reveals the cultural distance we have traveled since the debate over marijuana, LSD, and other drugs a generation ago. Unlike the drugs of the 1960s and 1970s, Ritalin and Adderall are not for checking out but for buckling down, not for beholding the world and taking it in but for molding the world and fitting in. We used to speak of nonmedical drug use as "recreational." That term no longer applies. The steroids and stimulants that figure in the enhancement debate are not a source of recreation but a bid for compliance-a way of answering a competitive society's demand to improve our performance and perfect our nature. This demand for performance and perfection animates the impulse to rail against the given. It is the deepest source of the moral trouble with enhancement.

Some see a clear line between genetic enhancement and other ways that people seek improvement in their children and themselves. Genetic manipulation seems somehow worse-more intrusive, more sinister-than other ways of enhancing performance and seeking success. But morally speaking, the difference is less significant than it seems. Bioengineering gives us reason to question the low-tech, high-pressure child-rearing practices we commonly accept. The hyperparenting familiar in our time represents an anxious excess of mastery and dominion that misses the sense of life as a gift. This draws it disturbingly close to eugenics.

The shadow of eugenics hangs over today's debates about genetic engineering and enhancement. Critics of genetic engineering argue that human cloning, enhancement, and the quest for designer children are nothing more than "privatized" or "free-market" eugenics. Defenders of enhancement reply that genetic choices freely made are not really eugenic-at least not in the pejorative sense. To remove the coercion, they argue, is to remove the very thing that makes eugenic policies repugnant.

Sorting out the lesson of eugenics is another way of wrestling with the ethics of enhancement. The Nazis gave eugenics a bad name. But what, precisely, was wrong with it? Was the old eugenics objectionable only insofar as it was coercive? Or is there something inherently wrong with the resolve to deliberately design our progeny's traits?

James Watson, the biologist who, with Francis Crick, discovered the structure of DNA, sees nothing wrong with genetic engineering and enhancement, provided they are freely chosen rather than state-imposed. And yet Watson's language contains more than a whiff of the old eugenic sensibility. "If you really are stupid, I would call that a disease," he recently told The Times of London. "The lower 10 percent who really have difficulty, even in elementary school, what's the cause of it? A lot of people would like to say, 'Well, poverty, things like that.' It probably isn't. So I'd like to get rid of that, to help the lower 10 percent." A few years ago Watson stirred controversy by saying that if a gene for homosexuality were discovered, a woman should be free to abort a fetus that carried it. When his remark provoked an uproar, he replied that he was not singling out gays but asserting a principle: women should be free to abort fetuses for any reason of genetic preference-for example, if the child would be dyslexic, or lacking musical talent, or too short to play basketball.

Watson's scenarios are clearly objectionable to those for whom all abortion is an unspeakable crime. But for those who do not subscribe to the pro-life position, these scenarios raise a hard question: If it is morally troubling to contemplate abortion to avoid a gay child or a dyslexic one, doesn't this suggest that something is wrong with acting on any eugenic preference, even when no state coercion is involved?

Consider the market in eggs and sperm. The advent of artificial insemination allows prospective parents to shop for gametes with the genetic traits they desire in their offspring. It is a less predictable way to design children than cloning or pre-implantation genetic screening, but it offers a good example of a procreative practice in which the old eugenics meets the new consumerism. A few years ago some Ivy League newspapers ran an ad seeking an egg from a woman who was at least five feet ten inches tall and athletic, had no major family medical problems, and had a combined SAT score of 1400 or above. The ad offered $50,000 for an egg from a donor with these traits. More recently a Web site was launched claiming to auction eggs from fashion models whose photos appeared on the site, at starting bids of $15,000 to $150,000.

On what grounds, if any, is the egg market morally objectionable? Since no one is forced to buy or sell, it cannot be wrong for reasons of coercion. Some might worry that hefty prices would exploit poor women by presenting them with an offer they couldn't refuse. But the designer eggs that fetch the highest prices are likely to be sought from the privileged, not the poor. If the market for premium eggs gives us moral qualms, this, too, shows that concerns about eugenics are not put to rest by freedom of choice.

A tale of two sperm banks helps explain why. The Repository for Germinal Choice, one of America's first sperm banks, was not a commercial enterprise. It was opened in 1980 by Robert Graham, a philanthropist dedicated to improving the world's "germ plasm" and counteracting the rise of "retrograde humans." His plan was to collect the sperm of Nobel Prize-winning scientists and make it available to women of high intelligence, in hopes of breeding supersmart babies. But Graham had trouble persuading Nobel laureates to donate their sperm for his bizarre scheme, and so settled for sperm from young scientists of high promise. His sperm bank closed in 1999.

In contrast, California Cryobank, one of the world's leading sperm banks, is a for-profit company with no overt eugenic mission. Cappy Rothman, M.D., a co-founder of the firm, has nothing but disdain for Graham's eugenics, although the standards Cryobank imposes on the sperm it recruits are exacting. Cryobank has offices in Cambridge, Massachusetts, between Harvard and MIT, and in Palo Alto, California, near Stanford. It advertises for donors in campus newspapers (compensation up to $900 a month), and accepts less than five percent of the men who apply. Cryobank's marketing materials play up the prestigious source of its sperm. Its catalogue provides detailed information about the physical characteristics of each donor, along with his ethnic origin and college major. For an extra fee prospective customers can buy the results of a test that assesses the donor's temperament and character type. Rothman reports that Cryobank's ideal sperm donor is six feet tall, with brown eyes, blond hair, and dimples, and has a college degree-not because the company wants to propagate those traits, but because those are the traits his customers want: "If our customers wanted high school dropouts, we would give them high school dropouts."

Not everyone objects to marketing sperm. But anyone who is troubled by the eugenic aspect of the Nobel Prize sperm bank should be equally troubled by Cryobank, consumer-driven though it be. What, after all, is the moral difference between designing children according to an explicit eugenic purpose and designing children according to the dictates of the market? Whether the aim is to improve humanity's "germ plasm" or to cater to consumer preferences, both practices are eugenic insofar as both make children into products of deliberate design.

A number of political philosophers call for a new "liberal eugenics." They argue that a moral distinction can be drawn between the old eugenic policies and genetic enhancements that do not restrict the autonomy of the child. "While old-fashioned authoritarian eugenicists sought to produce citizens out of a single centrally designed mould," writes Nicholas Agar, "the distinguishing mark of the new liberal eugenics is state neutrality." Government may not tell parents what sort of children to design, and parents may engineer in their children only those traits that improve their capacities without biasing their choice of life plans. A recent text on genetics and justice, written by the bioethicists Allen Buchanan, Dan W. Brock, Norman Daniels, and Daniel Wikler, offers a similar view. The "bad reputation of eugenics," they write, is due to practices that "might be avoidable in a future eugenic program." The problem with the old eugenics was that its burdens fell disproportionately on the weak and the poor, who were unjustly sterilized and segregated. But provided that the benefits and burdens of genetic improvement are fairly distributed, these bioethicists argue, eugenic measures are unobjectionable and may even be morally required.

The libertarian philosopher Robert Nozick proposed a "genetic supermarket" that would enable parents to order children by design without imposing a single design on the society as a whole: "This supermarket system has the great virtue that it involves no centralized decision fixing the future human type(s)."

Even the leading philosopher of American liberalism, John Rawls, in his classic A Theory of Justice (1971), offered a brief endorsement of noncoercive eugenics. Even in a society that agrees to share the benefits and burdens of the genetic lottery, it is "in the interest of each to have greater natural assets," Rawls wrote. "This enables him to pursue a preferred plan of life." The parties to the social contract "want to insure for their descendants the best genetic endowment (assuming their own to be fixed)." Eugenic policies are therefore not only permissible but required as a matter of justice. "Thus over time a society is to take steps at least to preserve the general level of natural abilities and to prevent the diffusion of serious defects."

But removing the coercion does not vindicate eugenics. The problem with eugenics and genetic engineering is that they represent the one-sided triumph of willfulness over giftedness, of dominion over reverence, of molding over beholding. Why, we may wonder, should we worry about this triumph? Why not shake off our unease about genetic enhancement as so much superstition? What would be lost if biotechnology dissolved our sense of giftedness?

From a religious standpoint the answer is clear: To believe that our talents and powers are wholly our own doing is to misunderstand our place in creation, to confuse our role with God's. Religion is not the only source of reasons to care about giftedness, however. The moral stakes can also be described in secular terms. If bioengineering made the myth of the "self-made man" come true, it would be difficult to view our talents as gifts for which we are indebted, rather than as achievements for which we are responsible. This would transform three key features of our moral landscape: humility, responsibility, and solidarity.

In a social world that prizes mastery and control, parenthood is a school for humility. That we care deeply about our children and yet cannot choose the kind we want teaches parents to be open to the unbidden. Such openness is a disposition worth affirming, not only within families but in the wider world as well. It invites us to abide the unexpected, to live with dissonance, to rein in the impulse to control. A Gattaca-like world in which parents became accustomed to specifying the sex and genetic traits of their children would be a world inhospitable to the unbidden, a gated community writ large. The awareness that our talents and abilities are not wholly our own doing restrains our tendency toward hubris.

Though some maintain that genetic enhancement erodes human agency by overriding effort, the real problem is the explosion, not the erosion, of responsibility. As humility gives way, responsibility expands to daunting proportions. We attribute less to chance and more to choice. Parents become responsible for choosing, or failing to choose, the right traits for their children. Athletes become responsible for acquiring, or failing to acquire, the talents that will help their teams win.

One of the blessings of seeing ourselves as creatures of nature, God, or fortune is that we are not wholly responsible for the way we are. The more we become masters of our genetic endowments, the greater the burden we bear for the talents we have and the way we perform. Today when a basketball player misses a rebound, his coach can blame him for being out of position. Tomorrow the coach may blame him for being too short. Even now the use of performance-enhancing drugs in professional sports is subtly transforming the expectations players have for one another; on some teams players who take the field free from amphetamines or other stimulants are criticized for "playing naked."

The more alive we are to the chanced nature of our lot, the more reason we have to share our fate with others. Consider insurance. Since people do not know whether or when various ills will befall them, they pool their risk by buying health insurance and life insurance. As life plays itself out, the healthy wind up subsidizing the unhealthy, and those who live to a ripe old age wind up subsidizing the families of those who die before their time. Even without a sense of mutual obligation, people pool their risks and resources and share one another's fate.

But insurance markets mimic solidarity only insofar as people do not know or control their own risk factors. Suppose genetic testing advanced to the point where it could reliably predict each person's medical future and life expectancy. Those confident of good health and long life would opt out of the pool, causing other people's premiums to skyrocket. The solidarity of insurance would disappear as those with good genes fled the actuarial company of those with bad ones.

The fear that insurance companies would use genetic data to assess risks and set premiums recently led the Senate to vote to prohibit genetic discrimination in health insurance. But the bigger danger, admittedly more speculative, is that genetic enhancement, if routinely practiced, would make it harder to foster the moral sentiments that social solidarity requires.

Why, after all, do the successful owe anything to the least-advantaged members of society? The best answer to this question leans heavily on the notion of giftedness. The natural talents that enable the successful to flourish are not their own doing but, rather, their good fortune-a result of the genetic lottery. If our genetic endowments are gifts, rather than achievements for which we can claim credit, it is a mistake and a conceit to assume that we are entitled to the full measure of the bounty they reap in a market economy. We therefore have an obligation to share this bounty with those who, through no fault of their own, lack comparable gifts.

A lively sense of the contingency of our gifts-a consciousness that none of us is wholly responsible for his or her success-saves a meritocratic society from sliding into the smug assumption that the rich are rich because they are more deserving than the poor. Without this, the successful would become even more likely than they are now to view themselves as self-made and self-sufficient, and hence wholly responsible for their success. Those at the bottom of society would be viewed not as disadvantaged, and thus worthy of a measure of compensation, but as simply unfit, and thus worthy of eugenic repair. The meritocracy, less chastened by chance, would become harder, less forgiving. As perfect genetic knowledge would end the simulacrum of solidarity in insurance markets, so perfect genetic control would erode the actual solidarity that arises when men and women reflect on the contingency of their talents and fortunes.

Thirty-five years ago Robert L. Sinsheimer, a molecular biologist at the California Institute of Technology, glimpsed the shape of things to come. In an article titled "The Prospect of Designed Genetic Change" he argued that freedom of choice would vindicate the new genetics, and set it apart from the discredited eugenics of old.

To implement the older eugenics ... would have required a massive social programme carried out over many generations. Such a programme could not have been initiated without the consent and co-operation of a major fraction of the population, and would have been continuously subject to social control. In contrast, the new eugenics could, at least in principle, be implemented on a quite individual basis, in one generation, and subject to no existing restrictions.

According to Sinsheimer, the new eugenics would be voluntary rather than coerced, and also more humane. Rather than segregating and eliminating the unfit, it would improve them. "The old eugenics would have required a continual selection for breeding of the fit, and a culling of the unfit," he wrote. "The new eugenics would permit in principle the conversion of all the unfit to the highest genetic level."

Sinsheimer's paean to genetic engineering caught the heady, Promethean self-image of the age. He wrote hopefully of rescuing "the losers in that chromosomal lottery that so firmly channels our human destinies," including not only those born with genetic defects but also "the 50,000,000 'normal' Americans with an IQ of less than 90." But he also saw that something bigger than improving on nature's "mindless, age-old throw of dice" was at stake. Implicit in technologies of genetic intervention was a more exalted place for human beings in the cosmos. "As we enlarge man's freedom, we diminish his constraints and that which he must accept as given," he wrote. Copernicus and Darwin had "demoted man from his bright glory at the focal point of the universe," but the new biology would restore his central role. In the mirror of our genetic knowledge we would see ourselves as more than a link in the chain of evolution: "We can be the agent of transition to a whole new pitch of evolution. This is a cosmic event."

There is something appealing, even intoxicating, about a vision of human freedom unfettered by the given. It may even be the case that the allure of that vision played a part in summoning the genomic age into being. It is often assumed that the powers of enhancement we now possess arose as an inadvertent by-product of biomedical progress-the genetic revolution came, so to speak, to cure disease, and stayed to tempt us with the prospect of enhancing our performance, designing our children, and perfecting our nature. That may have the story backwards. It is more plausible to view genetic engineering as the ultimate expression of our resolve to see ourselves astride the world, the masters of our nature. But that promise of mastery is flawed. It threatens to banish our appreciation of life as a gift, and to leave us with nothing to affirm or behold outside our own will.

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Michael J. Sandel teaches political philosophy at Harvard University.

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Breakthroughs in genetics present us with a promise and a predicament. The promise is that we may soon be able to treat and prevent a host of debilitating diseases. The predicament is that our newfound genetic knowledge may also enable us to manipulate our own nature-to enhance our muscles, memories, and moods; to choose the sex, height, and other genetic traits of our children; to make ourselves "better than well."