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Summary of a number of talks at the Third International Summit on HGE

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Summary of a number of talks at the Third International Summit on HGE

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Samenvatting aantal presentaties Third International Summit on Human Genome Editing

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Summary 'Conversations' van de Counter Summit Event: Genetic Justice from Start to Summit

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Summary 'Conversations' van de Counter Summit Event: Genetic Justice from Start to Summit

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Samenvatting Counter Summit Event CGSdocx

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Statement from the Organising Committee of the Third International Summit on Human Genome Editing

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Statement from the Organising Committee of the Third International Summit on Human Genome Editing

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A prudent path forward for genomic engineering and germline gene modification: A framework for open discourse on the use of CRISPR-Cas9 technology to manipulate the human genome is urgently needed

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A prudent path forward for genomic engineering and germline gene modification: A framework for open discourse on the use of CRISPR-Cas9 technology to manipulate the human genome is urgently needed

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Heritable human genetic modifications pose serious risks, and the therapeutic benefits are tenuous, warn Edward Lanphier, Fyodor Urnov and colleagues.

It is thought that studies involving the use of genome-editing tools to modify the DNA of human embryos will be published shortly.

There are grave concerns regarding the ethical and safety implications of this research. There is also fear of the negative impact it could have on important work involving the use of genome-editing techniques in somatic (non-reproductive) cells.

We are all involved in this latter area of work. One of us (F.U.) helped to develop the first genome-editing technology, zinc-finger nucleases (ZFNs), and is now senior scientist at the company developing them, Sangamo BioSciences of Richmond, California. The Alliance for Regenerative Medicine (ARM; in which E.L., M.W. and S.E.H. are involved), is an international organization that represents more than 200 life-sciences companies, research institutions, non-profit organizations, patient-advocacy groups and investors focused on developing and commercializing therapeutics, including those involving genome editing.

Genome-editing technologies may offer a powerful approach to treat many human diseases, including HIV/AIDS, haemophilia, sickle-cell anaemia and several forms of cancer. All techniques currently in various stages of clinical development focus on modifying the genetic material of somatic cells, such as T cells (a type of white blood cell). These are not designed to affect sperm or eggs.

In our view, genome editing in human embryos using current technologies could have unpredictable effects on future generations. This makes it dangerous and ethically unacceptable. Such research could be exploited for non-therapeutic modifications. We are concerned that a public outcry about such an ethical breach could hinder a promising area of therapeutic development, namely making genetic changes that cannot be inherited.

At this early stage, scientists should agree not to modify the DNA of human reproductive cells. Should a truly compelling case ever arise for the therapeutic benefit of germline modification, we encourage an open discussion around the appropriate course of action.

Genome editing of human somatic cells aims to repair or eliminate a mutation that could cause disease. The premise is that corrective changes to a sufficient number of cells carrying the mutation - in which the genetic fixes would last the lifetimes of the modified cells and their progeny - could provide a 'one and done' curative treatment for patients.

For instance, ZFNs are DNA-binding proteins that can be engineered to induce a double-strand break in a section of DNA. Such molecular scissors enable researchers to 'knock out' specific genes, repair a mutation or incorporate a new stretch of DNA into a selected location.

Sangamo BioSciences is conducting clinical trials to evaluate an application of genome editing as a potential 'functional cure' for HIV/AIDS. The hope is that intravenous infusion of modified T cells will enable patients to stop taking antiretroviral drugs. A phase I trial in patients with β-thalassaemia - a genetic blood disorder caused by insufficient haemoglobin production - is scheduled to begin this year.

The newest addition to the genome-editing arsenal is CRISPR/Cas9, a bacteria-derived system that uses RNA molecules that recognize specific human DNA sequences. The RNAs act as guides, matching the nuclease to corresponding locations in the human genome. CRISPR/Cas9 is the simplest genome-editing tool to work with because it relies on RNA-DNA base pairing, rather than the engineering of proteins that bind particular DNA sequences.

" The precise effects of genetic modification to an embryo may be impossible to know until after birth. "

The CRISPR technique has dramatically expanded research on genome editing. But we cannot imagine a situation in which its use in human embryos would offer a therapeutic benefit over existing and developing methods. It would be difficult to control exactly how many cells are modified. Increasing the dose of nuclease used would increase the likelihood that the mutated gene will be corrected, but also raise the risk of cuts being made elsewhere in the genome.

In an embryo, a nuclease may not necessarily cut both copies of the target gene, or the cell may start dividing before the corrections are complete, resulting in a genetic mosaic. Studies using gene-editing in animals such as rats, cattle, sheep and pigs, indicate that it is possible to delete or disable genes in an embryo - a simpler process than actually correcting DNA sequences - in onlysome of the cells.

The current ability to perform quality controls on only a subset of cells means that the precise effects of genetic modification to an embryo may be impossible to know until after birth. Even then, potential problems may not surface for years. Established methods, such as standard prenatal genetic diagnostics or in vitro fertilization (IVF) with the genetic profiling of embryos before implantation, are much better options for parents who both carry the same mutation for a disease.

Patient safety is paramount among the arguments against modifying the human germ line (egg and sperm cells). If a mosaic embryo is created, the embryo's germ line may or may not carry the genetic alteration. But the use of CRISPR/Cas9 in human embryos certainly makes onward human germline modification a possibility. Philosophically or ethically justifiable applications for this technology - should any ever exist - are moot until it becomes possible to demonstrate safe outcomes and obtain reproducible data over multiple generations.

Because of such concerns - as well as for serious ethical reasons - some countries discouraged or prohibited this type of research a decade before the technical feasibility of germline modification was confirmed in rats in 2009 (ref. 9). (Today, around 40 countries discourage or ban it.)

Many countries do not have explicit legislation in place permitting or forbidding genetic engineering in humans - considering such research experimental and not therapeutic (see go.nature.com/uvthmu). However, in nations with policies regarding inheritable genetic modification, it has been prohibited by law or by measures having the force of law.

This consensus is most visible in western Europe, where 15 of 22 nations prohibit the modification of the germ line. Although the United States has not officially prohibited germline modification, the US National Institutes of Health's Recombinant DNA Advisory Committee explicitly states that it "will not at present entertain proposals for germ line alterations" (see go.nature.com/mgscb2).

In general, researchers who want to investigate the clinical uses of genetically engineered somatic cells must secure people's informed consent. In the United States, this takes place under the oversight of the Food and Drug Administration and the Department of Health and Human Services. For research involving genetic modification of the germ line, it is unclear what information would be needed - or obtainable - to adequately inform prospective parents of the risks, including to future generations.

Many oppose germline modification on the grounds that permitting even unambiguously therapeutic interventions could start us down a path towards non-therapeutic genetic enhancement. We share these concerns.

Ten years ago, the Genetics and Public Policy Center, now in Washington DC, brought together more than 80 experts from the United States and Canada to consider the scientific and ethical consequences of genetically modifying the human germ line. Now that the capability for human germline engineering has emerged, we urge the international scientific community to engage in this type of dialogue. This is needed both to establish how to proceed in the immediate term, and to assess whether, and under what circumstances - if any - future research involving genetic modification of human germ cells should take place. Such discussions must include the public as well as experts and academics.

An excellent precedent for open, early discussion as new scientific capabilities emerge was set by the hearings, consultations and reports involving scientists, bioethicists, regulators and the general public that preceded the UK government's decision to legalize mitochondrial DNA transfer in February. We are not, of course, making a comparison between the replacement of faulty mitochondrial DNA in an egg or embryo with healthy DNA from a female donor and the use of genome-editing in human embryos. In mitochondrial transfer, the aim is to prevent life-threatening diseases by replacing a known and tiny fraction of the overall genome.

Key to all discussion and future research is making a clear distinction between genome editing in somatic cells and in germ cells. A voluntary moratorium in the scientific community could be an effective way to discourage human germline modification and raise public awareness of the difference between these two techniques. Legitimate concerns regarding the safety and ethical impacts of germline editing must not impede the significant progress being made in the clinical development of approaches to potentially cure serious debilitating diseases.

Author information

Affiliations

1. Edward Lanphier is president and chief executive officer of Sangamo BioSciences in Richmond, California, USA, and chairman of the Alliance for Regenerative Medicine in Washington DC, USA.

Edward Lanphier

2. Fyodor Urnov is senior scientist at Sangamo BioSciences in Richmond, California, USA.

Fyodor Urnov

3. Sarah Ehlen Haecker is director of technology sections at the Alliance for Regenerative Medicine in Washington DC, USA.

Sarah Ehlen Haecker

4. Michael Werner is executive director of the Alliance for Regenerative Medicine in Washington DC, USA.

Michael Werner

5. Joanna Smolenski is a PhD student in philosophy at the Graduate Center of the City University of New York, New York, USA.

Joanna Smolenski

Corresponding author

Correspondence to Edward Lanphier.

Ethics declarations

Competing interests

E.L. and F.U. are employees of Sangamo BioSciences, Inc.

Related links

Related links

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About this article

Further reading

Karin R. Jongsma

& Annelien L. Bredenoord

BMC Medical Ethics (2020)

Abbie Jedwab

, Danya F. Vears

, Cheryl Tse

& Christopher Gyngell

Journal of Human Genetics (2020)

Konrad Szocik

, Ziba Norman

& Michael J. Reiss

Science and Engineering Ethics (2020)

Sebastian Schleidgen

& Susan Sgodda

Ethik in der Medizin (2020)

Qosay A. E. Al-Balas

, Rana Dajani

& Wael K. Al-Delaimy

Science and Engineering Ethics (2020)

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Heritable human genetic modifications pose serious risks, and the therapeutic benefits are tenuous, warn Edward Lanphier, Fyodor Urnov and colleagues. It is thought that studies involving the use of genome-editing tools to modify the DNA of human embryos will be published shortly. There are grave concerns regarding the ethical and safety implications of this research.

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International Declaration Against Legalisation of Human Genetic Modification

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International Declaration Against Legalisation of Human Genetic Modification

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Deutsche Version // Version Française // Versión en castellano // English version //

The undersigned organisations and individuals support the existing strong international consensus against genetic modification of human beings (HGM*). We wish to express our great concern about and opposition to those scientific academies and others presently seeking to legalise HGM. HGM is medically unnecessary. Pursuing it is an act of extreme scientific irresponsibility, likely to result in enormously harmful consequences for individuals and for global society as a whole.

Human cloning and HGM were banned in international human rights treaties and in many countries in the 1990s, primarily because of the terrible history of eugenics. We support this deeply-felt and principled international ethical consensus. New technical abilities to conduct HGM do not change that consensus. We believe:

Designing children's genes runs counter to accepted basic visions of diversity and the inclusion and equality of all vulnerable individuals and minority groups. Rather than competitively genetically 'enhancing' children, we want to encourage a world that celebrates and accepts all individuals and groups of people and that does not rely on oppressive and biological determinist prejudices about what constitutes a 'better' human being. Allowing HGM would exacerbate existing social inequalities. It would be an act of scientific irresponsibility and, in a time of rising neo-fascism, of political irresponsibility as well.

Like human cloning, HGM is referred to in international declarations and treaties as contrary to human dignity, because it reduces human beings, to the status of designed and optimised consumer objects.

There are a range of robust alternative methods for avoiding genetic conditions, so the only advantage of HGM would be for ensuring 100% genetic parenthood of the child. It can never be ethical to submit a child to the severe health risks of genetic modification for this purpose.

We are also concerned about the exploitation of and health risks to those sourced for eggs for research to make HGM possible.

We call upon the UN to create an international convention to permanently ban HGM and human cloning. For the sake of our children and of our common humanity we must not cross this ethical line.
* We use the term 'human genetic modification' (HGM) rather than 'genome editing'. Scientists seeking to promote HGM introduced the later term to allay public concerns about creating designer children. We use the term 'human genetic modification' to refer to genetic modification of human eggs, sperm, or embryos to create a person who is genetically engineered in all cells of their body and will pass on the genetic changes to their offspring. Genetic engineering of cells for purposes of treating a particular disease as, for example, skin, liver, or lung cells, which we do not oppose, is usually referred to as somatic gene therapy.
Contact us: info at coalitionstopdesignerbabies.net
TO SIGN THE DECLARATION AS AN INDIVIDUAL OR AS AN ORGANISATION, PLEASE FILL IN THIS FORM

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International Coalition to Stop Designer Babies

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Deutsche Version // Version Française // Versión en castellano // English version // The undersigned organisations and individuals support the existing strong international consensus against genetic modification of human beings (HGM*). We wish to express our great concern about and opposition to those scientific academies and others presently seeking to legalise HGM.

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The use of art and design for public and stakeholder engagement

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The use of art and design for public and stakeholder engagement

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Who is represented at the summit and who do you miss?

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Who is represented at the summit and who do you miss?

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Are there international initiatives mentioned that are comparable to de DNA dialoog?

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Are there international initiatives mentioned that are comparable to de DNA dialoog?

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Which role does civil society has in agenda setting?

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Which role does civil society has in agenda setting?

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Third International Summit on HGE - DAG 3

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Third International Summit on HGE - DAG 3

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Third International Summit on HGE - DAG 2

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Third International Summit on HGE - DAG 2

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Designer baby eugenics and how to stop it

A teach-in and campaign planning day organised by: Stop Designer Babies (SDB), Alliance for Humane Biotechnology (USA), Gen-ethisches Netzwerk (Germany, GeneEthics (Australia)

10am - 5pm March 4, 2023 Somers Town Living Centre, Ossulton St London NW1 and online. FREE, Register here

Come along to discuss the urgent need for action to stop the harsh realities of modern eugenics. Designer babies are not science-fiction any more - the first genetically modified children were announced in 2018. Despite global outrage, the British government is now trying to overturn the legal ban on human genetic modification (HGM) this year. HGM would create genetic changes with unpredictable long term effects which would be passed on to all future generations, affecting their human rights and intergenerational equity.

In this time of increasing right-wing extremism, allowing HGM would be utterly irresponsible. This event is timed to coincide with a summit at the nearby Francis Crick Centre on March 6, where scientific and industry groups are meeting to push the agenda of HGM forward. As Vandana Shiva said at our event last year, 'There is an attempt to make people forget eugenics .... that's why your work is so important.'

Because eugenics targets disabled, black, Jewish and working class people and other groups and traits perceived as 'undesirable', this event will be a chance to share perspectives from different social movements. We must face the threat that eugenics poses to human rights and defend basic concepts of social diversity, equality and inclusion of everyone.
Sessions on

History of eugenics 1900 to 2023, including Somers Town connection

Introduction to the science and politics of HGM

Perspectives from black/anti-racist, disability rights, working class, feminist, parents and human rights movements

International perspectives

UK and international campaign planning

Speakers will include David King (Stop Designer Babies), Theo Simon (musician and trade unionist), Dr Michael Antoniou, gene therapy researcher, invited representatives of disability rights, anti-racist, working class and other social movements and International Coalition signatories, tbc.

During the lunchtime break, participants are encouraged to visit the Somers Town People's Museum (100m away), where there will be a mini-exhibition on the Somers Town connection with eugenics.

To register, click here.

If you support the work we are doing, please consider making a donation to Stop Designer Babies.

For more information, contact info@stopdesignerbabies.org

=========
SDB is recruiting a campaigner
Stop Designer Babies is a small London-based pro-choice campaign group dedicated to preventing the legalisation of genetic modification of human beings (the creation of GM babies), which raises many social justice concerns.

We are looking for a freelance part time campaigner (8 hrs/week) to work with us from October 2022 until March 2023. There are possibilities for increase in the number of hours and extension of the role. Main tasks will be event organising and publicity, campaign outreach, social media and administration.

Please contact info@stopdesignerbabies.org for the job description. Application deadline is 5pm October 2nd 2022.

======

Mini-conference: Why Your Movement Should Oppose Designer Babies
How do social movements' politics connect to the campaign against designer babies? With Vandana Shiva, Sarah Boon, Donna Dickenson, Tina Stevens, Claire Robinson, Pete Shanks, Bob Phelps and others.
International scientists' groups are pushing for the creation of genetically modified (GM) designer babies, and in 2023 there will probably be an attempt to legalise them in the UK. Although it's clear that allowing GM babies would have harmful effects on human rights and basic human equality, some social movements have not yet taken up this issue. Our panel of speakers from feminist, anti-racist, disability rights, working class, and green movements will explain why all these movements must oppose designer babies.

This will be followed by a panel of international speakers that will explain why over 70 countries already ban GM babies. Only a global ban on the creation of cloned or GM designer babies will ensure that minorities and global society in general is protected from human genetic engineering.
//Schedule of the mini-conference// Section 1: Basics Section 2: social movements against HHGE/eugenics

Feminist perspective: Donna Dickenson

Decolonial perspective: Vandana Shiva (Navdanya)

Quick Q&A

Disability rights perspective: Sarah Boon ( autisticallysarah.com )

Environmental perspective: Claire Robinson (GMWatch)

Q&A and debate + break

Section 3: International perspective
For more information, or to be kept informed about SDB events, contact info at stopdesignerbabies.org.

See our Facebook or Twitter

To make a donation to SDB, click here

BIOGRAPHIES OF SPEAKERS:

Tina Stevens: Tina Stevens is Director of Alliance for Humane Biotechnology, a non-profit dedicated to raising public awareness about the social implications of new developments in biotechnology. An historian of US history with a specialty in the history of bioethics, she earned her PhD from the University of California at Berkeley. She also holds a masters degree in Jurisprudence and Social Policy from University of California's Berkeley Law, where she specialized in Law, Medicine, and Society. She is Lecturer Emerita at San Francisco State University and is the author of, Bioethics in America: Origins and Cultural Politics (Johns Hopkins University Press, 2000) and co-author with biologist Stuart A. Newman of, Biotech Juggernaut: Hope, Hype, and Hidden Agendas of Entrepreneurial BioScience (Routledge, 2019.)

Donna Dickenson: Professor Donna Dickenson is Emeritus Professor of Medical Ethics and Humanities at the University of London and also holds an honorary position at the University of Bristol School of Medicine. Previously she taught at Imperial College School of Medicine, London, working extensively with clinicians in both research and teaching. For many years she served on the Ethics Committee of the Royal College of Obstetricians and Gynaecologists, helping to draw up guidelines for practice in controversial areas. On the international level, she was Principal Investigator of four European Commission projects in such areas as evidence-based medicine and property in human tissue. She is the author of 25 books and over a hundred academic articles, with her most recent books including Property in the Body (second edition, Cambridge University Press, 2017) and Me Medicine vs. We Medicine: Recaliming Biotechnology for the Common Good (Columbia University Press, 2013). In 2006 she became the first woman to win the high-profile International Spinoza Lens Award for her contribution to public debate on ethics.

Sarah Boon: Sarah is an autistic self-advocate who campaigns for autistic acceptance and seeks to address the inequalities autistic people experience in society. Sarah is speaking today about why the research project Spectrum 10K is unpopular among the autistic community and how it fails to consider the wants and needs of the autistic community.

Pete Shanks: Pete Shanks was born in the British Empire, educated in England, and has lived in California since the 1970s. He has been actively involved in Human Genetic Engineering issues for over 20 years [and frequently writes for Biopolitical Times, published by the Center for Genetics and Society]

Taleo Stüwe: Taleo Stüwe works for the Gen-ethisches Netzwerk (gen-ethical network), a group of scientists and activists providing the public with a critical picture of biotechnology and reproductive technology, aimed at balancing science's self-representation through academia, industry and polity.
And in case the chair wants more information on me:
Taleo engages particularly with reproductive technologies. They are currently writing their PhD about developments in prenatal testing and their influence on gynaecological practice at the University of Cologne.

Jérôme Santolini: Senior Scientist at I2BC, head of the Oxidative Stress and Detoxification Lab. Member of the NGO "Sciences citoyennes" (citizen sciences), mostly concerned by the questions of scientific information, research policies, biotechnologies and technoscientific controversies

Bob Phelps: Bob Phelps founded GeneEthics in 1988 to campaign, advocate and educate for GM-free futures. The Australian Government awarded him a Federation Medal in 2004 for services to the Australian Community in his role as GeneEthics Executive Director.

===========================================================
WEBINAR: GM 'Designer Babies': Breakthrough or Nightmare?
Please help us to publicise this event by sharing with friends and colleagues

Dec 8th 7pm GMT online Organised by Stop Designer Babies

FREE registration here

In 2018, the Chinese scientists created the world's first genetically modified (GM) babies. Despite the worldwide outrage, next March the science establishment are meeting in London to push the 'genome editing' agenda forward.

Some scientists claim that genetic modification is needed to prevent genetic diseases, but is that really true? In a world still riven with disability, race and class oppression and other examples of eugenics, will allowing people to engineer their babies' genes make social inequalities even worse? Will it turn children into just another designed and optimised commodity?

Join us at our free online event to discuss these issues and what we can do about them.

Sigrid Graumann, feminist bioethicist and member of the German Ethics Council will make the case against GM babies.

Angus Clarke, clinical geneticist from Cardiff University will explain why genetic modification is unnecessary.

PLUS contributions from:

Stuart Newman, developmental and evolutionary biologist with long-time interest in the uses and misuses of developmental biology in human health and reproduction will contribute on the subject of the inherent biological uncertainties of embryo gene modification.

Marcy Darnovsky, executive Director at the Center for Genetics and Society will tell us about what's left out and what's distorted in the "official" debate about heritable genome editing.

Chair: Dave King, SDB

Register here. For more information, or to be kept informed about SDB events, contact info@stopdesignerbabies.org. We are planning another event in February on the links between climate, GM food and GM babies.

See our Facebook or Twitter

To make a donation to SDB, click here
=========================================================== MEDIA RELEASE EMBARGO: 1pm BST July 12, 2021 We need a global ban on human genetic engineering, not 'governance'
Stop Designer Babies (1) today criticised the WHO reports on 'global governance' of human genome editing. The reports expend many words to say nothing concrete, and fail to recommend the obvious solution to the risks of unregulated creation of genetically modified (GM) designer babies, as He Jiankui did in 2018.

Dr David King (2), a member of the group said: "This is an abdication of the WHO's responsibility. It is obvious that the only practical solution to the risks of rogue scientists and profit-minded IVF clinics starting a new free market eugenics is a comprehensive global ban treaty. That is why over 70 countries have already effectively banned it. The mealy-mouthed call for 'governance' is a technocratic strategy, which we have already seen from other scientific establishment bodies, for eventual normalisation of human genetic engineering."
Notes for editors

1. Stop Designer Babies (www.stopdesignerbabies.org) is a new UK-based grassroots campaigning group dedicated to a global ban on human genetic engineering. We are a pro-choice group. More information see www.stopdesignerbabies.org/about.

2. Dr David King is a former molecular biologist and long-term campaigner against human genetic engineering.

=========================================================== MEDIA RELEASE For immediate release Thursday November 14 2019
Activists mount first street protest against designer babies
Today, activists from the new campaigning group Stop Designer Babies (SDB; 1) are mounting the first street protest against the drive by some scientists to create genetically modified (GM) babies. SDB is demonstrating outside a meeting (2) of a group of scientists who are planning how to conduct GM baby experiments without asking the public whether we should go in that direction.

Since other well-established techniques exist for avoiding the birth of children with genetic diseases (3), there is no medical need for human genetic engineering (4). It is because of the risk of a free market form of eugenics (5) that governments around the world banned the creation of cloned and GM babies over 20 years ago. At a time of massive inequality and rising right-wing authoritarianism, human genetic engineering is a weapon of mass social destruction, and the move to legalise it is the ultimate in scientific irresponsibility.

The intention of this self-appointed international commission to push ahead with the creation on GM babies is extremely clear. After an initial decision to wait until there was a 'broad social consensus', within 18 months the US National Academy of Sciences decided that creating GM babies was ethically acceptable, and a year later the UK's Nuffield Council on Bioethics said that even creating genetically 'enhanced' designer babies was acceptable. The Commission's remit (6) shows that it is open to considering such genetic 'enhancements', despite the strong ethical consensus that has existed for many years against allowing such designer babies. Even when there was worldwide outrage at the birth of GM babies in China in 2018, the Commission refused to advocate a moratorium.

These moves are typical of an official bioethics system that is dominated by techno-enthusiastic scientists and that always decides in favour of every new genetic technology, no matter what the consequences. The Commission's members include several open supporters of human genetic engineering, but none who have publicly opposed it, such as the many signatories to an international statement that will shortly be published (7). The speakers at its meetings have also been dominated by those eager to move ahead toward designer babies. This technocratic process of engineering and disregarding public opinion and imposition of every new genetic technology is exactly what led to the campaign against GM foods.

David King, a member of Stop Designer Babies, said: "Given the determination of a small group of scientists to press ahead with human genetic engineering, regardless of consequences, it is vital that ordinary people stand up and say no to a future of eugenics and turning children into just another consumer item."

For more information about the protest, contact David King on (+44)20 7502 7516/(+44)7854 256040.
Notes for editors

1. Stop Designer Babies is a group of grassroots activists, scientists and other opponents of human genetic engineering. It is a secular group that supports abortion rights. For more details see stopdesignerbabies.org

2. The meeting of the International Commission on Clinical Use of Human Germline Genome Editing is taking place at the Sainsbury wing of The National Gallery, Trafalgar Square, on November 14, and at the Royal Society on November 15.

3. Parents who know that they are at risk of a having child with a genetic disease have several options for avoiding that. The low-tech traditional method is adoption. Secondly, since because of the way genetics works, genetic diseases result from the combination of both parents' genes, parents can choose to use either egg or sperm cells from someone else to create the baby. As with adoption, this will mean that one parent at least is not the genetic parent of the child. Many people place much importance on upon being their child's genetic parent. However, that is a social benefit, not a medical benefit to anyone. It is highly questionable whether it is ethical to subject the child to considerable risks from novel invasive technologies for the sake of such a benefit. Thirdly, parents may start a pregnancy and have prenatal genetic testing and abort an affected foetus. Finally, there is the option of preimplantation genetic diagnosis (PGD), which involves producing embryos through IVF and testing a batch of 10 embryos to find one which does not have the mutation.This spectrum of methods can prevent the birth of children with genetic diseases, except in a minuscule number of hypothetical cases, as all reports on the science and ethics of this issue agree. Thus, creating GM babies, with all the risks to both the child and society that it entails, can never be ethical. We fail to understand why scientists who know this perfectly well still insist in media interviews that genetic engineering is the only solution.

4. Stop Designer Babies is not opposed to somatic gene therapy; we use the term 'human genetic engineering' in the same way that people speak of plant and animal genetic engineering, to indicate the genetic engineering of the germline (e.g. by engineering embryos) in a way that passes the changes on to all descendants of the person whose genome has been engineered.

5. Advocates of human engineering sometimes claim that the idea of free market eugenics is a 'scare story'. However, there are already aspects of such a system operating today, such as in the US egg donation market, where Ivy League students are paid 10 times more for their eggs than ordinary women. In the past two weeks, a US company, Genomic Prediction, has announced that it will be selling genetic tests on embryos that allow parents to avoid children with low IQ, whilst UK health minister, Matt Hancock, has announced the governments ambition to sequence the genomes of all British babies at birth, starting with a pilot of 20,000.

6. The Commission's remit can be found at: https://nas.edu/gene-editing/international-commission/statement-of-task/index.htm.

7. For more details of the statement, agreed at a meeting of bioethicists, scientists and activists in Geneva earlier this year, please contact the Centre for Genetics and Society: darnovsky@geneticsandsociety.org.

=========================================================== MEDIA RELEASE For immediate release, March 14, 2019 Call for moratorium on GM babies is part of the problem, not part of the solution
New grassroots activist group Stop Designer Babies (1) today criticised the call of a group of scientists for a moratorium on the creation of GM babies, arguing that it is really part of a technocratic procedure for manipulating public opinion, in order to eventually permit them. Although a moratorium is better than the current trend towards legalisation, scientists' self-regulation, lacking legal teeth, would be flouted by those scientists determined to go ahead, as has already been shown.

Since there is no medical need for this technology, a permanent global legal ban is therefore the only proper solution, but the Nature article actually opposes such a ban. It even fails to call for a ban on genetic 'enhancement', only stating that this would not be acceptable 'at this time'. It also advocates the extremely dangerous eugenic 'solution' of widespread preconception screening, and ignores the many public statements of opposition to such a new eugenics by disabled people.

Stop Designer Babies warned that scientists would face a social backlash similar to that over GM foods, if it continued to push for these medically entirely unnecessary technologies.

David King, a member of the Stop Designer Babies group said, "Do not be fooled by another group of scientists and ethicists claiming to be 'more responsible' than rogue scientist He Jiankui. All they are trying to do is to bring the approval of this new technology back within the normal technocratic process for engineering public acceptance. There is absolutely no medical need for creating GM babies. But human genetic engineering would be a Weapon of Mass Social Destruction, especially in an era of rising right-wing authoritarianism. Only a global treaty banning cloned and genetically modified babies can halt the threat of a new eugenics."

For more information, call +44 208 809 4513/+44 7854 256040.
Notes for editors
1. Stop Designer Babies is an international network of concerned citizens and activists seeking to prevent the legalisation and normalisation of designer babies, created following the news of the birth of the first GM babies in China. An organisation that supports the right of women to terminate their pregnancies, we seek an international ban on human germline genetic engineering and cloning.

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A teach-in and campaign planning day organised by: Stop Designer Babies (SDB), Alliance for Humane Biotechnology (USA), Gen-ethisches Netzwerk (Germany, GeneEthics (Australia) 10am - 5pm March 4, 2023 Somers Town Living Centre, Ossulton St London NW1 and online. FREE, Register here Come along to discuss the urgent need for action to stop the harsh realities of modern eugenics.

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Date:

Friday 3rd - Saturday 4th March 2023

Venue:

St Mary's University, Waldegrave Room

Heritable genetic modifications, which seek to change the entire genetic heritage of a human being and all their possible descendants, are increasingly being considered in biomedicine.

But a risk now exists that eugenic ideology may return and that the lives of some children may be considered as unworthy of life. Thus, it is necessary to examine whether such modifications may undermine the present equality and coherence of civilised society.

The Centre of Bioethics and Emerging Technologies at St Mary's University, Twickenham, is delighted to host this international conference in partnership with the Scottish Council for Human Bioethics.

Draft programme

Please see our draft programme for more details.
Book your place now

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Heritable Genome Editing and Equality | St Mary's University

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Date: Friday 3rd - Saturday 4th March 2023 Venue: St Mary's University, Waldegrave Room Heritable genetic modifications, which seek to change the entire genetic heritage of a human being and all their possible descend­ants, are increasingly being considered in biomedicine.

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Genetic Justice from Start to Summit

Centering social justice in debates on heritable genome editing

Feb 27 & 28, 2023

Civil society voices and perspectives, particularly those grounded in social justice and human rights, need to be at the center of discussions around heritable human genome editing -- but that's not what you'll find at the Third International Summit on Human Genome Editing.

This two-part online CGS event will center social justice and human rights, presenting voices and perspectives from feminist, disability rights, reproductive rights and justice, racial justice, environmental, and human rights movements and scholars, who will question whether heritable genome editing has any place in a fair and inclusive future.

Join us for the conversations on genetic justice that you won't hear at the Summit, and learn about ways to engage in discussions of heritable genome editing at the Summit and beyond.

ASL/CART provided

Monday, February 27, 9:00-10:30am PST
[12pm EST / 5pm UK / 6pm CET / 7pm SAST]

Tuesday, February 28, 9:00-11:00am PST
[12pm EST / 5pm UK / 6pm CET / 7pm SAST]
Background and Resources Related Events Speaker Bios
Schedule
DAY 1: Monday FEB 27, 9:00-10:30am PST
noon-1:30pm EST / 5-6:30pm UK / 6-7:30pm CET / 7-8:30pm SAST

History and context of the Summit process
Marcy Darnovsky

The social justice case against heritable genome editing
Dorothy Roberts, Rosemarie Garland-Thomson, George Annas, Silvia Yee (moderator)

DAY 2: Tuesday FEB 28: 9:00-11:00am PST
noon-2pm EST / 5-7pm UK / 6-8pm CET / 7-9pm SAS

Missing voices speak out
Larkin Taylor Parker, Abril Saldaña, Dana Perls, Nourbese Flint, Emily Galpern (moderator)

Genetic justice beyond the Summit
Isabelle Bartram, Maria Ní Flatharta, Milton Reynolds, Katie Hasson

Background and Resources

2023 Summit

2018 Summit, aftermath, and 2020 report

More on heritable genome editing:

Germline Modification Could Be New Frontier of Reproductive and Disability Oppression | Emily Galpern, Biopolitical Times (Jan 2020)

5 Reasons to Say No to Genetically Modified Humans

Human Germline and Heritable Genome Editing: The Global Policy Landscape | Françoise Baylis, Marcy Darnovsky, Katie Hasson, and Timothy M. Krahn, The CRISPR Journal (Oct 2020)

Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction | Roberto Andorno, Françoise Baylis, Marcy Darnovsky, Donna Dickenson, Hille Haker, Katie Hasson, Leah Lowthorp, et al., Trends in Biotechnology (Jan 2020)

Related Events

Heritable Genome Editing and Equality
March 3-4, in person at St. Mary's University, Twickenham, London
The Centre of Bioethics and Emerging Technologies at St. Mary's University, Twickenham and the Scottish Council for Human Bioethics will host an international conference on heritable genome editing and equality.Register here.

Designer baby eugenics and how to stop it
March 4, online and in person at Somers Town Living Centre, London.
Stop Designer Babies, Alliance for Humane Biotechnology, Gen-ethisches Netzwerk, GeneEthics are organizing a teach-in, both in person and online, featuring perspectives from black/anti-racist, disability rights, working class, feminist, parents, and human rights movements. Register here.

Third International Summit on Human Genome Editing
March 6-8, online and in person at the Francis Crick Institute, London.
The Royal Society, the UK Academy of Medical Sciences, the US National Academies of Sciences and Medicine and The World Academy of Sciences are organizing the third in a series of international summits on human gene editing. Check out theschedule and register here to attend online (in-person registration is now closed).

Speaker Bios

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Feb 27 & 28, 2023 Civil society voices and perspectives, particularly those grounded in social justice and human rights, need to be at the center of discussions around heritable human genome editing -- but that's not what you'll find at the Third International Summit on Human Genome Editing.

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Third International Summit on HGE - DAG 1

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Third International Summit on HGE - DAG 1

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Deel hier jouw gedachten, commentaar of vragen over dag 1 van de summit door op de tekstballon rechtsonder te klikken

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The Third International Summit on Human Genome Editing will take place on 6-8 March 2023 at the Francis Crick Institute, London UK.

The Third International Summit on Human Genome Editing will take place on 6-8 March 2023 at the Francis Crick Institute, London UK.

Building on previous events held in Washington, DC ( 2015) and Hong Kong ( 2018), the London meeting will continue the global dialogue on somatic and germline human genome editing. Major themes for discussion include developments in clinical trials and genome editing tools such as CRISPR/Cas9, as well as social, ethical and accessibility considerations these scientific developments entail.

The three-day Summit is being organised by the Royal Society, the UK Academy of Medical Sciences, the US National Academies of Sciences and Medicine and The World Academy of Sciences. Find out more about the Summit's Planning Committee, chaired by Professor Robin Lovell-Badge FMedSci FRS.

In preparation for the Summit, a three-part series of online events was held in 2022 ( Looking Ahead to the Third Human Genome Editing Summit), which focused on scientific developments, equity and access, and governance of human genome editing. Presentations for all the speakers are available on the event page.

Further information about the Summit agenda will be released soon, and registration to attend the event in person and online is now open.

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2023 Human Genome Editing Summit | Royal Society

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The Third International Summit on Human Genome Editing will take place on 6-8 March 2023 at the Francis Crick Institute, London UK. The Third International Summit on Human Genome Editing will take place on 6-8 March 2023 at the Francis Crick Institute, London UK.