I would argue that direct to consumer genetic testing is different from prescriptions for eyeglasses and medications for one very clear reason. With medications and even eye glasses you need to have a prescription because you are actually treating your body with something. If you have the wrong dose of a medication you can actually do the body harm. However, I see direct to consumer genetic testing as different.

Direct to consumer genetic testing is about providing information to an individual. Not all this information is even medical in nature, some of it concerns ancestry or basic traits like eye color. I feel people should be able to have such freedom to access their data. Companies like 23andMe provide the raw data as well so one can use second party programs like SNPedia to learn more if they wish. I don’t feel like one should be denied access to their raw genetic information, that information truly belongs to the individual.

One should not be required to have a prescription to get access to their own genetic data. I don’t see how such information is any more harmful to a patient then say family history. I know diabetes runs in my family for example. How is it any different knowing this than finding out the same from 23andMe?

In general I have a libertarian bias, but much less so in the area of health. Most people have a hard time understanding medical issues and most people aren’t at their best when they need health care – they are often in pain and scared. I wouldn’t try to regulate computer programs or tv shows because people might misunderstand them and done harmful things, but health, to me, is different. And not just to me – our whole health care system is full of unusually strong regulations. Practicing medicine without a license is a crime; so is selling a prescription drug without a prescription. Maybe the whole health care system is wrong in being paternalistic – and sometimes I think it has been, and continues to be, too paternalistic. But, for me, not here.

Reasonable people can certainly differ on that point, though. Thanks for posting.

As to the first point, yes, much more research is being done with people who aren’t of European ancestry now, but the vast bulk of the work linking SNPs to disease has been done with Europeans. At least two of the projects you mention, the Genographic Project and the Sorensen project, are expressly aimed at understanding human history and genealogy, respectively. They are looking both within and beyond Europe. I’m not sure what you mean by the Genome Project. The Human Genome Project’s human genome sequence was mainly, though not entirely, based on people of European descent (much of it on one European-American named Craig Venter). The HapMap, a major genomics project, did involve people of European ancestry, people from China, people from Japan, and members of the Yoruba people from Nigeria, roughly 1/3 each.

But don’t take my word on it. The recent GAO report on Direct to Consumer genetic tests talks about this at pages 10 and 11. It says

“Many of these studies the companies use to make risk predictions apply only to those of European ancestry. Consequently, our fictitious Asian and African American donors did not always receive risk predictions that were applicable to their race or ethnicity, although the companies either did not disclose these limitations prior to purchase or placed them in lengthy consent forms”.

It continues, giving examples from responses it received from four leading DTC companies.

“• Company 1 provided Donor 1’s fictitious African American profile with test results based on her race for just 1 of the 15 diseases we compared: type 2 diabetes. For the remaining diseases, Company 1 provided a risk prediction but included a disclaimer, such as “this result applies to people of European ancestry. We cannot yet compute more precise odds” for those of African American descent….
• Company 2 claimed on its Web site that it had “better coverage [of genes] associated with the most important diseases for all ethnicities” than its competitors. However, the company provided Donor 2’s fictitious Asian profile with test results for just 6 of the 15 diseases we compared….
• Company 3 sent Donor 3’s fictitious African American profile results for just 3 of the 15 conditions we compared.”

I think I’m right on this one.

On the second point, opinions differ a lot on this one, but, yes, in the United States and most rich countries, you do require a doctor to order (to prescribe) most drugs for you. You even have to get a prescription to buy eyeglasses or contact lenses. The drug exceptions are drugs like acetaminophen (Tylenol), where the FDA has decided they are safe and effective enough that they can be used without a doctor’ intervention – “over the counter” or OTC. I don’t think health-related genetic tests are that safe and effective. I