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Actual price of 23andMe DNA kit:

$99 + (12months X $9 each) + roughly $30 for shipping = $237 (total cost for the year) .

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The article raises questions that can guide an individual's decision about whether or not to have to have a genetic test.

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Sometimes the question facing people affected by a neuromuscular disease isn't "What kind of test should I have?" but "Should I have a test?"

Finding the correct diagnosis is a straightforward scientific process requiring technological tools and medical detective work (see " Getting the Correct Diagnosis in Neuromuscular Disease"). But like opening Pandora's box, receiving a diagnosis is anything but straightforward. A diagnosis, especially of a genetic disease, can carry an emotional punch that sends patient and far-flung relations reeling.

Now that people can be more easily and exactly tested for specific genetic diseases, the question "Do I want to know?" becomes acute. Below are some common issues confronting individuals and families today.

Q: Is it worth the expense and hassle to undertake new testing to confirm or refute an earlier diagnosis?

A: Yes - and no. In some cases, there are clear advantages to positively confirming your diagnosis; in other cases it won't make any difference at all.

The advantages are found in identifying inheritance patterns, gaining knowledge about the course of the disease and being able to participate in ongoing research.

Different neuromuscular diseases have different inheritance patterns; even within a single disease, such as Charcot-Marie-Tooth disease (CMT), there are genetic variations, says Karen Krajewski, certified genetic counselor and assistant professor of neurology at Wayne State University in Detroit.

If you have a disease with several genetic variations, and if you're hoping to participate in clinical research trials, a precise genetic diagnosis is essential. Knowing the exact mutation allows you to participate in clinical trials aimed at that form of the disease.

Knowing exactly what you have also can be informative when you're planning for parenthood. Rob Roozeboom of Sheldon, Iowa, received a diagnosis of Becker muscular dystrophy (BMD) when he was 5 years old. But in his early 20s - married and hoping to have children - MDA doctors began to suspect he had something else and gave him a DNA blood test for BMD. It came back negative. Based on the test, his disease progression and family history, Roozeboom's diagnosis was changed to limb-girdle muscular dystrophy (LGMD), changing the inheritance pattern for his future children.

BMD is X-linked, meaning all of Roozeboom's daughters would be carriers and would be at risk of having boys with BMD. But Roozeboom's form of LGMD apparently is autosomal recessive, meaning both parents need to be carriers in order for the disease to be manifested in a child. Although all of Roozeboom's children - boys and girls - will be LGMD carriers, the risk of the disease actually showing up in future generations of Roozebooms is less than with BMD.

"Being diagnosed with limb-girdle kind of allowed us to still pursue our dreams of children," Roozeboom says. On Nov. 4, the Roozebooms had a baby boy, Jager, who is doing well.

Even if parenthood isn't an issue, a genetic diagnosis can be useful for other family members. "In families where it's not clear if other people are affected, once you establish a genetic diagnosis, those individuals can be tested so that you know definitely," Krajewski explains.

Another advantage to knowing the genetic diagnosis is that some neuromuscular diseases carry increased risks for other disorders, such as a bad reaction to anesthesia, heart problems or diabetes. An exact diagnosis may help you prevent problems down the line or direct your doctor toward the most appropriate treatment.

But in general, if you have a diagnosis that seems to fit, aren't worried about inheritance patterns and don't plan to participate in a clinical trial, there's no real advantage at this time to confirming a diagnosis by genetic test. In fact, sometimes test results can be vague and ambiguous, leading to more confusion instead of less, Krajewski says.

And some insurance companies balk at paying for the expensive tests, especially if you get more than one. Genetic tests can range from several hundred to several thousand dollars each.

The decision to undergo further testing comes down to personal preference, Krajewski says. "For a lot of patients it [a precise diagnosis] doesn't change things for them. And for others, even though it might not change treatment, there is a feeling of control they get from knowing specifically what's happening, even if they can't do anything about it."

Q: Should children, siblings or other relatives who aren't showing any disease symptoms be tested anyway to see if they're carriers, or might develop the disease later?

A: In general, the medical establishment frowns on testing children for late-onset disease or carrier status if the children aren't showing any disease symptoms and if there's no medical or psychological benefit to knowing at a young age.

"There is no reason for a 6-year-old girl to know about her chances of having a child with a disability - that's her choice to make when she gets older," says Cheryl Scacheri, a senior genetic counselor with GeneDx in Gaithersburg, Md. "You [her parents] might make a different decision when the child becomes sexually active."

But if a family is adamant about testing a child, and they believe a test won't cause any medical or psychosocial harm, then health care providers should "respect the decision," say both the American Society of Human Genetics (ASHG) and American College of Medical Genetics (ACMG). Psychosocial issues include anxiety, negative self-image, uncertainty, social stigma and the impact of knowing on decisions about reproduction, education, career, insurance and lifestyle.

( Click here to see the ASHG/ACMG policy paper, "Ethical, Legal and Psychosocial Implications of Genetic Testing in Children and Adolescents.")

" Fred," feels strongly that his teen-age son - who isn't showing symptoms - shouldn't be tested. Fred, 53, recently learned that he has myotonic muscular dystrophy type 2 and is very concerned about psychosocial issues for his son.

"If he does have it, it probably won't begin to show up until his 40s. I don't want him to be worried at this age, when the disease might not even show up," he explains. "Every girl he thought of marrying he'd have to tell. I don't want to do that to him. I would rather he leads a normal life. If he finds out when he's almost 50, that's different. They may have treatment for it later."

On the other hand, psychosocial issues are the main reason Pete Siegel, 35, of Billings, Mont., wanted his 4-year-old son, Virgil, tested for CMT, although the boy didn't show any symptoms at the time. His son, now 12, tested positive for the disease.

Siegel's father and a few relatives have CMT, but Siegel never was told about it while growing up. He says he battled self-esteem issues because "I couldn't understand why I wasn't as fast and strong as everyone else. I thought it was just me." Siegel believes his father kept quiet about CMT out of fear, denial and maybe a little guilt.

If he'd known, Siegel says, he would have made different career decisions and gone to college. Instead he enlisted in the U.S. Marine Corps and then couldn't make it through boot camp. "I just made some poor choices in my life that if I'd known I had muscular dystrophy, I wouldn't have made."

When a doctor gave him the diagnosis at age 19, he felt betrayed and angry. "I felt they kept a secret from me that affected me. I could have been told when I was 10 or 12."

Siegel is open with Virgil, who already has CMT symptoms. "Whenever he asks questions, I tell him what I know. I don't sugarcoat it. He needs all the information he asks for." An avid hunter, fisherman and stock car racer, Siegel also encourages his son "not to let this be an excuse not to do something."

Lately, Siegel has been urging his sisters to have their children tested because "I see the signs in their legs. It's as plain as black and white. For me, knowledge is power. I believe that in my heart."

Q: What tests are available to see if an unborn child has a neuromuscular disease?

A: We live in a brave new world when it comes to prenatal diagnosis. It's now not only possible to tell if your unborn child has muscular dystrophy, but to ensure from the beginning of the pregnancy that he or she doesn't.

A definite "yes or no" diagnosis can be made via chorionic villus sampling (CVS) at 11 to 12 weeks gestation, or amniocentesis at 15 to 19 weeks. In CVS, cells from the developing placenta are examined; in amniocentesis some of the amniotic fluid surrounding the baby is drawn out and tested. Both tests very slightly increase the risk of miscarriage.

If the fetus is affected, a couple can decide whether to continue the pregnancy, knowing better how to prepare emotionally, financially and domestically for the new child.

With preimplantation genetic diagnosis (PGD), parents can know for sure that their baby doesn't have a particular genetic disease before pregnancy begins. PGD combines the fertility technology of in vitro fertilization with genetic testing.

Eggs are collected from the mother and fertilized in the lab with the father's sperm, and any resulting embryos are tested for the suspected genetic disease when they've grown to the eight-cell stage. Unaffected embryos then are implanted in the mother's womb. Pregnancy success rates range from 20 percent to 50 percent, with younger mothers having the best chances. PGD doesn't guarantee that a baby won't have other birth defects or difficulties.

For obvious reasons, prenatal diagnosis is a white-hot issue among parents and members of the disability community. It involves closely held attitudes toward abortion, the beginning of life, God, fate, disability, social responsibility and the definition of "a good life." Deciding whether to test an unborn child can be agonizing, but it's a couple's personal choice.

Robin Guyton, 39, of Bossier City, La., has a family history of Duchenne muscular dystrophy (DMD), including a 36-year-old brother affected by it. After bearing two daughters (now in their 20s), Robin decided to have amniocentesis with her last two pregnancies - a gut-wrenching but ultimately valuable experience. Her third child, Benjamin (BJ), has DMD but her son Taylor, born in October 2001, doesn't.

"With my first two pregnancies I was young. I didn't worry [about having a child with DMD], and there were no specific tests available anyway," she recounts. While pregnant with BJ she underwent amniocentesis but, after learning the baby was a boy, she decided she didn't want to know the results of the test for DMD.

"I thought, "If he has it, what will I do?" I know it's a horrible disease but my brother has had a productive life. I just couldn't throw away another human being. I went through a hundred different emotions. The lab people looked at me like I was stupid for not wanting to know, but it's a private thing."

But when she got pregnant again with Taylor, she decided she needed to know. "I know how special BJ is," she said. "I just wanted to be prepared in case there was a problem and to prepare the rest of the family. I felt very protective toward the [unborn] child and kind of isolated, like it was just us against the world."

Guyton and her husband, Robert, agreed they wouldn't terminate the pregnancy in case of DMD. The tests came back negative.

Guyton recommends prenatal testing to others with a family history of DMD. "This disease doesn't just affect one person, it affects everybody in the family. You need to prepare people and prepare yourself."

Q: Isn't there a downside to genetic testing? Could the results of a genetic test lead to discrimination by an employer or insurance company?

A: If you already have a documented medical diagnosis of a neuromuscular disease, having a genetic test to confirm the diagnosis won't make you more vulnerable to discrimination. If you have no symptoms and no diagnosis, some safeguards are in place to help protect against possible employment or insurance discrimination based on results of a genetic test.

The first, of course, is the Americans with Disabilities Act (ADA), which prohibits discrimination in employment on the basis of disability. In fact, having a definitive diagnosis can work in your favor, says genetic counselor Karen Krajewski, by documenting that you're covered under the act.

In 2001, the Equal Employment Opportunity Commission (EEOC), which enforces the ADA, shut down an apparent attempt at genetic discrimination by the Burlington Northern Santa Fe Railroad. The railroad was taking blood samples from employees who had filed workmen's compensation claims for carpal tunnel syndrome, allegedly looking for a genetic predisposition toward that disorder. Those who refused to give blood samples were threatened with dismissal. The EEOC ruled that, "Any test which purports to predict future disabilities, whether or not it is accurate, is unlikely to be relevant to the employee's present ability to perform his or her job."

Limited safeguards exist against insurance discrimination. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) says:

Genetic information may not be used to deny or limit coverage in the group (as opposed to individual) insurance market.

Genetic information is excluded from being considered as a preexisting condition.

In certain cases, federal protections against genetic discrimination cover people changing insurance coverage, such as in a divorce or a job change (providing certain standards are met).

Procedures, standards and security technology have been put in place to protect private personal health information, including the results of genetic testing, from being electronically stolen or released without the person's authorization.

Some state insurance laws offer even more protection than HIPAA; check with your state insurance commission to find out. For more information on HIPAA, visit www.cms.hhs.gov/hipaa or call the Centers for Medicare and Medicaid Services (CMS) at (877) 267-2323.

Federal employees were granted some additional safeguards against genetic employment discrimination in 2000, but progress has been slow in protecting the average citizen. Legislation designed to protect the privacy of genetic information and prohibit insurance and employment genetic discrimination has failed several times in Congress in recent years.

Q: Decisions about diagnosis and genetic testing can be really complicated, emotional and have far-reaching consequences. Where can you go for help sorting it all out?

A: That's what genetic counselors are for.

"Because of the tough choices you may encounter with genetic disease, it's good to have someone help you think through the options," genetic counselor Cheryl Scacheri says. "Genetics is a family thing. Physicians don't have as much time as genetic counselors to deal with all the surrounding issues."

A professional genetic counselor takes a detailed family medical history and explains inheritance patterns, reproductive options and the benefits, risks and limitations of testing. While counselors provide emotional support, they don't advocate any particular course of action. The goal of a professional counselor is to facilitate a family's decision making by offering information and outlining options. Most health insurance companies will cover genetic counseling for diagnostic purposes.

"It's best not to just have genetic counseling once," Scacheri advises. "Things change, life issues come up, nieces get pregnant, different things come up over time. It's good to touch base every once in a while."

No matter what you decide about undergoing testing, there's usually a positive benefit to counseling, she notes. "People can feel better about their decisions and not always be questioning what they're doing."

To locate a genetic counselor, ask for a referral from your MDA clinic physician, county medical society or health department, or contact the National Society of Genetic Counselors, at (610) 872-7608 or www.nsgc.org.

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Quest - Article - The Pros & Cons of Genetic Testing - A Quest Article | Muscular Dystrophy Association

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Sometimes the question facing people affected by a neuromuscular disease isn't "What kind of test should I have?" but "Should I have a test?" Finding the correct diagnosis is a straightforward scientific process requiring technological tools and medical detective work (see " Getting the Correct Diagnosis in Neuromuscular Disease").

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Blog article from a man who took the 23andme test

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I have been eager to find out my genetic predispositions for some time now. Thus, when 23andMe had an incredible one day sale for their phenotype DNA test, I just could not pass by such an opportunity to get what I wanted for me, while simultaneously doing a review of this new and interesting product for you.

The main question I was trying to answer was: Is it worth doing the phenotype DNA test?

In the end, my conclusion is that it is. However, for reasons listed below, other people may reach a different conclusion for themselves. Hopefully, after reading my review, you would be in a better position to make an informed decision whether such a product is right for you too. In order to accomplish that I will start with a brief video introduction to what is DNA in general and phenotype (or SNP) DNA in particular. Then, I will look at the process of taking the test and show you a video of how I did it myself. Consequently, I will proceed by looking at the associated costs as well as some of the issues surrounding the pro's and con's of getting the test done. Finally, I will end with my personal verdict of the product.

One of the really great things about 23andMe is the fact that they provide a sea of useful information for those who are interested in learning more about their genome and the interpretation of specific genes. For starters, you can visit the 23andMe YouTube Channel and watch some short educational videos about genetics. Here are the 3 most relevant and informative clips:
Genetics 101: What is DNA? Genetics 101: What is a SNP (Single Nucleotide Poliymorphism) What is Phenotype?
The Testing Process
During my Singularity 1 on 1 podcast interviews with a number of experts such as Aubrey de Grey, Terry Grossman and Andrew Hessel, I was told repeatedly that tests such as 23andMe 's personal genome service are among several tests that are worth doing. Given that, at best, I have a very limited knowledge of the field, I thought that I'd listen to their advice.

Here is how the process works:
The Saliva Sample DNA Test Kit Lab Processing of Saliva Samples The Costs
Recently, the price for 23andMe's personalized genome service went down from a one time fee of $199 to the current $99 USD. On top of that you have to pay kit shipping costs to and from your address plus $9 monthly on-line membership fee for one year. Thus, provided that you live somewhere in continental US and pay the full price, you should expect:

$99 + (12months X $9 each) + roughly $30 for shipping = $237 (total cost for the year)

In my case I took advantage of a one-day DNA Day Sale and thus had to pay only the shipping and the $9 monthly fee for 12 months. Since I am located in Canada my shipping was about $50 and hence my total yearly cost will end up being around $158.

Let me also say that in my opinion the $99 one time fee is a fair amount to pay for what you get so don't feel that you will be overpaying if you order your kit now. This way you can get your results in the fastest way possible. However, if you are interested in getting the best price possible, then I recommend that you start following the Spittoon - the 23andMe blog. There you can be among the first to hear about any future promotional discounts and sales you can take advantage of.
Full Genome Mapping vs. Phenotype (SNP) DNA Test

Now that we've covered the mechanics and the costs, it is time to mention at least some of the more important issues related to DNA testing in general and phenotype or SNP DNA testing in particular.

A big part of arguing for or against any test comes from understanding its goals, its accuracy and its implications. Thus, the first step of deciding, if it is worth doing for you or not, consists in finding out what the test does and does not do.

For starters, make sure you are clear that this is not a complete mapping of your personal genome. What 23andMe offers is a SNP DNA test. This means is that it does not map and examine all your 3 billion genome base pairs but tests only what are arguably the most important 1 million snips of your DNA. While this may be a small part of your total genome it is supposed to be a rather revealing one. In fact, it is for this reason that the test is so affordable. Otherwise, you would be looking to pay upwards of many thousands of dollars rather than the mere couple of hundred you would be paying with 23andMe. In addition to cost, another advantage of the SNP test is that it is much faster while the main disadvantage is that it is less accurate. So, make sure you understand the differences and recognize the pro's and con's of each test.

In terms of general accuracy, having a specific gene does not necessarily guarantee a specific or certain type of (health) outcome. Though the exact importance of your genes is still very much a matter of scientific debate, currently the predominant opinion claims that genes determine only about 20-30% of the outcome. The other 70-80% are a result of your environment and life choices such as nutrition, sleep and stress patterns, physical activity etc. Thus no DNA test can or will ever predict your future. At best, what it can do is provide you with a good idea of your odds but how you play those is up to you.
Can you handle the truth?
While the issues mentioned above pertain to the accuracy of DNA testing, the bigger issues are moral ones. So even if we can have perfectly accurate DNA test results, for many, the biggest question, at least at the personal level, is:

"Do I really want to know that?"

For example, when I told my family that I have sent a saliva sample for testing, my sister-in-law said that she does not really want to know what are her chances of developing breast cancer. So if you feel the same way and prefer to not know, then, you definitely should not take the test. I start from the presumption that knowledge is always better than ignorance, even if many may adopt the "ignorance is bliss" attitude.

There is also a whole other spectrum of legal, practical, political and ethical issues related to DNA testing but I will not dwell on those here for this is not the purpose of my review. All I will say is that it may be good to think through all the potential implications of your results before you actually do the test. (Perhaps you can watch a couple of movies such as Gattaca)
The Results
One thing that surprised me pleasantly was the fact that, even though 23andMe says your results take between 6 and 8 weeks, I had mine ready and uploaded to my on-line profile only 2 weeks after sending my sample.

Below is a screen-capture of my health overview home page. Have in mind that this is only a small fraction of a sea of personal information that 23andMe provides you with. In fact, I still haven't had the chance to read even half of it.

For reasons of privacy I will not go into all the minute details of my personal results but you should know that your DNA results are grouped into four main areas: Disease Risks, Carrier Status, Traits and Drug Response.

Each of those has its own homepage with dozens, if not hundreds, of specific items within its respective group (e.g. disease risks), which are then given a percentage number representing your specific personal risk, as well as the respective average general population risk.

Furthermore, each of those items is also clickable and thus you can go to its specific home page (e.g. Alzheimer's Disease), where you can read more about your own data and how that disease works or get some technical reports and scientific citations used to compile the information. All in all, we are talking thousands of pages of relevant in-depth scientific information which is regularly updated with the latest research for the duration that you pay your $9 monthly membership fee.

Another interesting element of your results is the information provided about your ancestry along your maternal and paternal lines. Here is a screen-shot of the map representing my maternal line.

For those interested in your family tree, know that there is an optional free "Relative Finder" service on your profile page where you can look for and get in touch with other people who have also opted into the database and you share genes with. In this way you can actually find distant relatives you never knew existed. Interestingly, while I haven't had the time to use or examine that part of my profile yet, since I did opt into the service, I was already contacted by someone who is a naturalized American of Bulgarian origin. According to 23andMe that person is probably my fifth cousin.
The Verdict
A big part of your decision is what you expect to find out and how you view the usefulness of any such information.

While curiosity was certainly a part of my motivation for taking the test, I had some very real medical concerns too. I come from a family with a long and lethal history of cancer, diabetes and heart disease. That fact has motivated me to make (mostly) healthy life-choices with respect to nutrition and physical activity. Yet, since genes play an important role, I thought that knowing more accurately my genetic predispositions can provide useful new information and prioritize and focus my efforts on specific things that I should and should not do.

I was relieved to find out that my odds are pretty good because I am showing decreased risk for most major ailments such as Heart Disease, Diabetes, Prostate Cancer, Alzheimer's and Parkinson's disease. However, even if it were mostly bad news, it would not have been a reason to despair. In fact, I would have been even more motivated to take action and have as healthy a lifestyle as I possibly can.

In the end of the day I strongly believe that 23andMe provides an excellent product and great value for the money. You can say that, given my results, I didn't make any big discoveries about my genome for there was nothing that really jumped out at me. Yet I did discover and, with every profile update, will continue to find out many important and interesting things both about my genes and my family tree. (Not to mention that I got connected with a person who may turn out to be a distant cousin of mine.)

Furthermore, even if it seems that I have been lucky genetically speaking, it does not mean that I did not benefit from the test. I would argue that the shorter the genetic straw you draw, the more important it is for you to be aware of it. Knowing about the existence of a potential problem is the only way that you can ever be proactive in avoiding it or, if necessary, be active towards resolving it. Indeed, it is a fact that cancer patients who get well educated about their medical condition have three times better chances of surviving than those who don't put any effort on their own but blindly follow their doctor's prescriptions.

While genetics is still a relatively new science in its early stages of development, we are already at the level where we can begin benefiting from it. DNA tests are not only here to stay but also a good example of a cutting edge application with serious potential benefits that you can access right now. So, even though in the future such tests will certainly be better, faster, cheaper and more accurate, at least until you are able to do a full mapping of your personal genome for a similar price, I will argue that this product is worth doing.

In short, based on the reasons above, I regularly recommend 23andMe 's Personal Genome Service to all my friends and relatives. In fact, my wife Julie will be next to send her saliva test.
Video Updates: 23andMe vs. the FDA in less than 4 minutes 23AndMe issues statement on FDA smackdown
Dear 23andMe Customers,

I wanted to reach out to you about the FDA letter that was sent to 23andMe last Friday.

It is absolutely critical that our consumers get high quality genetic data that they can trust. We have worked extensively with our lab partner to make sure that the results we return are accurate. We stand behind the data that we return to customers - but we recognize that the FDA needs to be convinced of the quality of our data as well.

23andMe has been working with the FDA to navigate the correct regulatory path for direct-to-consumer genetic tests. This is new territory, not just for 23andMe, but for the FDA as well. The FDA is an important partner for 23andMe and we will be working hard to move forward with them.

I apologize for the limited response to the questions many of you have raised regarding the letter and its implications for the service. We don't have the answers to all of those questions yet, but as we learn more we will update you.

I am committed to providing each of you with a trusted consumer product rooted in high quality data that adheres to the best scientific standards. All of us at 23andMe believe that genetic information can lead to healthier lives.

Thank you for your loyalty to 23andMe. Please refer to our 23andMe blog for updates on this process.

Anne Wojcicki
Co-founder and CEO, 23andMe

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23andMe DNA Test Review: It's Right For Me But Is It Right for You?

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I have been eager to find out my genetic predispositions for some time now. Thus, when 23andMe had an incredible one day sale for their phenotype DNA test, I just could not pass by such an opportunity to get what I wanted for me, while simultaneously doing a review of this new and interesting product for you.

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Article by a woman who took tests from 23andMe, Navigenics, and deCODEme.

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23andMe's feature called 23andWe allowed me to share this milk indigestion problem with them. On the lactose intolerance page, I took a survey about drinking milk and checked the option: "Yes, I'm pretty sure I am [lactose intolerant]. Milk shakes are my enemy." The point? This information "could lead to major insights when combined with genetic information from the 23andMe database," the Web site read. I wished for a moment that all this educational material had been available when I was taking genetics in high school. I clicked on the section "Genetics 101" and watched one of the animated videos: A banana has 11 pairs of chromosomes, one video said. The side dish of ancestry information enabled me to trace my maternal line back 35,000 years.

When it comes to pinning down your risk of more complex diseases, it's a bit challenging for someone of mixed ethnicity. You have the option to pick only one ethnicity. So when I clicked on European, the results didn't quite match up to what I saw when I clicked on Asian. My risk for type 2 diabetes and rheumatoid arthritis was both low and high, depending on which ethnicity I chose. So what happens when you're both, like me? I printed out the discrepancies to ask the 23andMe founders in person.

After going to Navigenics in January, I went to 23andMe. I took a 10-minute cab ride to 23andMe's office, enjoying the Silicon Valley scene: the smell of fresh air, suburban tree-lined streets, bikers in spandex on their way to work, and men in suits standing on street corners with laptop bags in hand. I entered 23andMe's nondescript building and waited in the lobby, playing with the toys there: fingers flashing red lights, pins that say "I spat," and stress balls on the coffee table. Sweaty employees jogged down the stairs in their gym clothes, returning from personal training sessions and making their way to a kitchen stocked full of snacks.

One of the cofounders of 23andMe, Linda Avey, told me the company wants to create the world's largest database of DNA information. Glad I helped contribute to their plans for world (DNA) domination, I found myself thinking. What is halting progress is the lack of people involved in genetic studies, not the technology, Avey said. By translating thousands of scientific discoveries and interpreting what the discoveries mean to an individual, they hope to "break down the barriers between the general public and what is going on in academic science," she explained.

The idea of starting 23andMe evolved out of cubicle chatter. Avey had thought about collecting people's DNA when she was working at her former job. She'd sit around with coworkers and talk about how great it would be if "we had more genetic information on more people so that we could learn more about why people get a disease." At this point Anne Wojcicki, cofounder of 23andMe, entered our conversation full of energy. Wojcicki's interest began when she was working in the biotech investment field. "All this money goes into research, and very little comes out of it," she said. "One of the biggest challenges is getting enough data." Getting more data means more people will have to spit. Google has bought into this notion: So far, the company has invested $3.9 million in 23andMe and an undisclosed amount in Navigenics. (Google's cofounder, Sergey Brin, is married to Wojcicki.)

Frustration over mounds of genetic information never making it out of genetic research cliques is understandable, but I had my own frustration to address. You get the best results if you are of European descent. I told the founders I was an Asian-European mix, and when I clicked on the different options on the Web site, I got conflicting results. I wanted to know why. "Research needs to go a significant step further," Wojcicki admitted. "23andMe's goal is to advance genetics research in this area. So 12 months from now, when you're logging on to the site every day, we hope the data is more reflective of your [ethnic] background."

Later that night in my hotel room, I logged on to my 23andMe account. I noticed a new addition to the FAQs; it was about mixed ethnic backgrounds. So I clicked on it: "Because genetic association studies are generally performed in populations of a particular ethnic background [European, Asian, African], we cannot know whether the associations will also apply to those of a mixed background.... Feel free to look at the different incidence estimates the 23andMe Odds Calculator provides for different ethnicities, but take the estimates with even more grains of salt than usual."

DeCODEme
Like any good medical consumer, I got a third opinion. DeCODE genetics is known for discovering genetic risk factors for type 2 diabetes, early-onset heart attack, and breast cancer, among others. For this unscientific reason alone, I decided to use the company's test-named deCODEme-to validate the other two.

I bought the test for a dollar-the best dollar I've ever spent. Normally it costs $985. (I gave in to temptation and accepted the reporter's discount.) A few days later, I received my "buccal DNA collector" in the mail. By popping this stick in and out of my mouth for two minutes, I collected cheek cells-certainly a nice change from spitting. I mailed my sample off to deCODE genetics' in-house testing lab in Reykjavík, Iceland.

There's something to be said for taking a test three times. Seeing my genetic risks displayed online seemed perfectly normal now-just as normal as checking my e-mail. When I received a message in my in-box telling me that my analysis was ready, I signed on to my deCODEme account to view my results. First I adjusted the settings to my sex and age and even checked an option to say please contact me if there's a chance to participate in genetic research. I had to pick Asian or European-again, no dual ethnic function existed. Finally I explored the 29 diseases and traits available at my fingertips.

First I pretended to be fully Asian and saw that I was at risk of developing type 2 diabetes, colorectal cancer, and rheumatoid arthritis. Next I was a European female.This time I was at risk for age-related macular degeneration, atrial fibrillation, rheumatoid arthritis, and Crohn's disease. Yikes.

The CEO of deCODE genetics, Kári Stefánsson, interpreted my results for me. It is not the norm to have the CEO look at your results. Usually you'd receive your results online, and it would largely be up to you to interpret them for yourself. Stefánsson is the famous gene hunter who spearheaded the effort that mapped 65 percent of Iceland's genome. I printed out my two summary reports-the Asian and the European-for him to look at.

I walked from my office to meet Stefánsson in the lobby of his hotel in Manhattan. Dressed all in black, he intimidated me. It wasn't because at 6 foot 5 he towered over me or that he made fun of my wimpy handshake. What intimidated me was his confidence. If there were such a thing as a preacher for genetic testing, Stefánsson would be converting a lot of people. But after talking to him for hours, I realized Stefánsson was a lighthearted, matter-of-fact, all-around amazing guy-someone you'd invite to a dinner party to guarantee interesting conversation.

"There's a paradigm shift from intervention to preventive medicine as we speak," he said. "It happened when people started to download information about diseases. This didn't happen before. Doctors used to be omnipotent; no one ever questioned them." Knowledge is power.

I asked him to read my genetic horoscope. He looked at the European results first.

"You're at high risk for developing atrial fibrillation, so cut back on how much alcohol and coffee you drink," he said, ever so calmly. A person with atrial fibrillation has irregular heartbeats that can cause blood clots and lead to strokes. "The biggest alarm here is the possibility of developing macular degeneration." I know I've mentioned this before, but seriously, I'm at risk of going blind in, like, 35 years. And that worries me, since I can't see crap without my glasses now.

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How Much Can You Learn From a Home DNA Test?

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23andMe's feature called 23andWe allowed me to share this milk indigestion problem with them. On the lactose intolerance page, I took a survey about drinking milk and checked the option: "Yes, I'm pretty sure I am [lactose intolerant]. Milk shakes are my enemy." The point?

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A family reunited through 23andMe

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Tim was seven years old when he was informed that he had been adopted at birth. His adoptive parents were getting a divorce and they felt that this was as good a time as any to reveal this to him. Tim confided in me that when he learned this he immediately wanted to learn more about his birth mother. For the first three years after the adoptive parents divorced, he lived with his mother. At the age of 10, he moved in with his adoptive father, Russ. As he never really got along with his mother, he decided that he wanted to meet his birth mother. As he put it to me, "I was all set in the father department; he is a great guy and raised me well on his own but my life lacked the maternal side of the equation." However, there is only so much a 10 year old can do. A few years later, his adoptive mother died, leaving a void in whatever maternal needs he sought and increasing his desire to find his birth mother.

Tim is now 44 and 15 years ago he began putting more effort into tracking down his birth mother. Unfortunately, the adoption records had been sealed and he was finding it very difficult to make any progress in discovering her identity. 11 years ago he became a father and he knew that he had to do something because now, more was at stake. Was there anything in his genetics that might be of concern for him or his daughter? Besides, he wanted his daughter to have someone to call "grandma." There were DNA tests available, but they usually ran about $1,500 and he could not really afford to pay $3,000 to have a test run on both him and his daughter; especially when the results were not guaranteed to provide any useful information.

In December 2012 Tim saw an advertisement for
23andme.com, a center that does genetic evaluations of health, disease and ancestry through a DNA test done with your saliva; the best thing about it was that it only cost $99. He was naturally skeptical, but did some research and discovered that they had recently received a $50 million dollar infusion from Wall Street which enabled them to lower their cost to $99 per person. What really sold him though was their relative finder. This feature allows their clients to discover and contact any relatives that have also used this service; Tim had 930 genetic relatives in the 23andme database. He immediately went to work attempting to make contact with as many as he could. It was then that a cousin from Uruguay that directed him to a Yahoo DNA group designed for people that were adopted or had put children up for adoption to discuss their DNA results. It was there that Tim became familiar with Search Angels and he met Diana, his soon to be Search Angel.

Search Angels do the hard work of searching through public records and try to provide information about one's family based on the DNA test results. There are businesses out there that will do this for you, but it can cost upwards of $5,000 and there are no real guarantees. Search Angels do it out of the kindness of their hearts; in fact, Tim offered to pay Diana but she refused payment. Tim provided her with the little information that he had received from his DNA test and in a matter of a few short hours; Diana informed him that she had found information on his mother, a sister and an uncle. After 15 years of looking, Tim took his saliva DNA test on December 19, 2012; on January 20, 2013 Tim's Search Angel provided him the information on his birth family.

To make a long story short, Tim spoke with his new sister, Debbie, and she informed his birth mother that Tim had found them and asked if she wanted to meet with him. On January 30, Tim's mother, Patty, flew in from Hawaii and met her son and her granddaughter. Tim asked me to photograph the reunion to memorialize it, and I was more than willing to do so. It was quite touching.

I got the opportunity to meet Tim's sister online; when I asked her what she thought of all this, her response was quick and simple, "From my perspective, I believe in miracles and this is one."

I also corresponded with Search Angel Diana about her participation in reuniting Tim with him mother and she said, "I am proud to say I have been able to do the same thing for hundreds of people and each one still gives me the chills; in a good way. I was so very glad Tim posted when he did as I had just joined the same group, so he didn't have to spend the money to get the information he needed." Diana suggests that before you pay anyone to help you find your family to seek the assistance of a search angel. Most specialize in different states and can be found on various websites and Facebook pages.

If you would like to read more about this story and see all the photos, you can find it at
http://www.gotbaddog.com/search-angel-reunites-mother-son/

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23andme and Search Angel reunite mother and son

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Tim was seven years old when he was informed that he had been adopted at birth. His adoptive parents were getting a divorce and they felt that this was as good a time as any to reveal this to him. Tim...

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A site that compares the pros and the con's of genetic testing. It tells pro's and then gives the con's about what could possiblly be wrong with the pro.

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The Universe of Genetic Testing | Lab Tests Online

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This article examines the various ways that new research in genetic testing can impact your healthcare.

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Forbes article on the class action case.

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That didn't take long. Quite literally about 5 days from the date of the FDA's warning letter to 23andMe (11/22 - here) and the filing of a class action law suit in the Southern District Court of California (11/27 - here).

While the merits of the legal case are best suited for legal interpretation and debate, the damage to the marketing of general purpose Personal Genome Services (by 23andMe or any other company) could be significant. As stated in the filing:
"NATURE OF THE ACTION" 1. This proposed class action alleges that 23andMe, Inc. ("Defendant") falsely and misleadingly advertises their Saliva Collection Kit/Personal Genome Service ("PGS") as providing "health reports on 240+ conditions and traits", "drug response", "carrier status", among other things, when there is no analytical or clinical validation for the PGS for its advertised uses. 2. In addition, Defendant uses the information it collects from the DNA tests consumers pay to take to generate databases and statistical information that it then markets to other sources and the scientific community in general, even though the test results are meaningless. 3. Despite Defendant's failure to receive marketing authorization or approval from the Food and Drug Administration ("FDA"), Defendant has slowly increased its list of indications for the PGS, and initiated new marketing campaigns, including television advertisements in violation of the Federal Food, Drug and Cosmetic Act ("FDC Act").
It's that second bullet point that's at the very heart of the FDA filing and subsequent debate. Are the test results "meaningless?" Absent the scientific rigor of an FDA process - how do we as consumers know?

In light of all the recent publicity, several stories have also surfaced that call into question that exact point.

"The point is that if I cannot trust 23andMe to tell me much of value about my risk factor for Celiac, or my ability to digest dairy products or coffee, or to get my son's results right, can I trust it for anything? What should I do if it tells me that I am at higher risk of developing Alzheimer's or lung cancer? The answer is ... not lose any sleep about it." Bernard Munos - Forbes Contributor - 11/29/2013 ( 23andMe: A Fumbling Gene In It's Corporate DNA)

"I sent a support request to 23andMe including my research and conclusions (this would be called a "bug report" in software engineering). After a few days of waiting, 23andMe confirmed the bug and apologized. So the bug was not inside of me, but in the algorithm. An algorithm can be fixed easily, unlike my genetic code." Lukas F. Hartmann - 11/26/2013 ( Why 23andMe Might Have The FDA Worried: It Wrongly Told Me I Might Die Young)

The controversy extends further back too. This was filed in April of 2011.

My suggestion is that unless you have a specific reason behind your motivation, don't bother with genetic testing services, especially if you're not of European ancestry and you're under the age of 30. I can see how it may be useful as a preemptive measure for people with a family history of a debilitating disease, or for people who are seeking out long-lost relatives. But for the rest of us, the money is probably better spent towards a gym membership, more fruits and vegetables and health/life insurance. And not having to worry for the rest of your life about something that may or may not happen to you? That's priceless. Elly Hart - Night Editor, Allure Media ( Why 23andMe Genetic Testing Is A Waste of Time and Money)

Ms. Hart also points out a legal dilemma that has yet to be tested. The Genetic Information Nondiscrimination Act (GINA - 2008 here) specifically prohibits the use of genetic information in health insurance and employment. GINA has no such applicability to Disability or Life Insurance as noted by this repetitive 23andMe disclaimer: "GINA does not cover life or disability insurance providers" (8 occurrences here).

All of which is why the FDA was correct in issuing their warning. It's one thing to believe in the false hopes and misleading promises of dietary supplements. It's something else entirely when an email arrives warning you of a serious health condition or genetic risk lurking in your DNA. For anything beyond ancestral curiosity, personal genetic data definitely needs the full rigor of scientific review and accuracy.

... Read More

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Class Action Law Suit Filed Against 23andMe

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That didn't take long. Quite literally about 5 days from the date of the FDA's warning letter to 23andMe (11/22 - here) and the filing of a class action law suit in the Southern District Court of California (11/27 - here). While the merits of the legal case are best suited for legal [...]

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Here's another sites that talk about the pro's of Genetics

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What are the benefits of genetic testing?

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Genetic testing has potential benefits whether the results are positive or negative for a gene mutation. Test results can provide a sense of relief from uncertainty and help people make informed decisions about managing their health care. For example, a negative result can eliminate the need for unnecessary checkups and screening tests in some cases.

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Discussion with my mom

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A Prezi with the pros and cons to 23andMe.

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23andMe Decision Pros Being able to take precautions for health issues. Know about our past ancestry Fulfill curiosity about your genome Know if you're a carrier for a disease Rather low cost Cons Taking precautions for diseases outrageously.

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Discussion with my 13 year-old cousin