It sounds like such a fun holiday gift idea: a DNA test that can tell your sister-in-law whether she really has Native American ancestors, or one that promises to create your friend a perfect diet based on his genes.
Home DNA tests are likely a big seller for the next few weeks, but privacy experts say consumers should be cautious, and New York Sen. Chuck Schumer said this past weekend that he was asking the Federal Trade Commission to “take a serious look at this relatively new kind of service and ensure that these companies can have clear, fair privacy policies.”
The problem is that when you send away a tube of your spit or a cheek swab, you are giving away your full genetic code. Every cell on that cheek swab carries the full sequence of your DNA, including the mutation pattern that makes it uniquely yours.
Legitimate genetic testing companies promise not to sell or give this data away without consent. But usually, a broad consent is part of the initial contract a consumer makes with a company when he or she submits the test for analysis. Even if you do read the whole agreement, which can go on for pages, you may not understand what you’re giving the company permission to do.
And it really doesn’t matter if your sample is earmarked for use in tracing Neanderthal ancestors or just looking for rare disease genes. It doesn’t matter if the sample is destroyed. The code itself is digitized and can be shared countless times and in countless ways.
A 2008 law called the Genetic Information Nondiscrimination Act forbids discrimination based on genetic information and that would include firing someone because they have a gene that predisposes to an expensive disease.
Right now, it’s hard to identify anyone based strictly on their DNA sequence. But as people enter more and more information into databases, it could become easier.
23andme has an extensive questionnaire about health, lifestyle habits, and preferences and while it allows customers to skip any questions they choose to, they can be contributing a lot of personal detail with their DNA sample.
In 2013, a team at the Whitehead Institute for Biomedical Research said they figured out the identities of 50 people from DNA donated anonymously for scientific study using easily available internet databases. That’s why companies do their best to strip away personal information from the genetic codes, but anyone who has been the victim of credit card fraud or identity theft know that anonymizing data is far from foolproof.
Most of the sharing is for legitimate, scientific research and many people may want to help in that endeavor. People may not want to help a company trying to make a profit off their DNA, and may not associate “scientific research” with enriching a corporate bottom line. And people may think they are ready to get some interesting news about their disease risks, until they actually get it. People getting genetic testing at a clinic will almost certainly be offered counseling, but not so for home tests.
Read more at Medical Laboratory Observer