It seems simple and harmless enough: you spit into a vial, mail it in and learn about your family history. Home DNA test kits have exploded in popularity recently, with millions of people willingly providing a sample of their DNA in exchange for learning about their genetic heritage and potential health risks. And while for many it’s simply a matter of curiosity, fun or genealogical research, experts warn there may be unanticipated implications of at-home DNA tests, and potential legal issues.
Here’s a closer look at what’s at stake.
Privacy rights and at-home DNA testing
Some experts caution that consumers who use DNA test kits may not have a clear understanding of what they’re giving up. In “The Rising Popularity of At-Home DNA Testing,” on indianapublicmedia.org, experts say when a consumer agrees to the terms provided by the DNA test kit supplier, they are likely giving up not only their own privacy rights, but the rights of future generations. Even the Federal Trade Commission (FTC) has cautioned that users should take time to understand how their personal DNA data will be used and shared, according to, “At-home DNA tests help answer questions about ancestry, but are there privacy risks?” on circa.com.
Who has your unique genetic information, and how they use it, could have massive implications, some of which are already playing out in real time. And at times consumers are learning information about themselves and their families that is sometimes at the very least uncomfortable and confusing and at most could lead to a potential legal quagmire.
Here are a few recent situations that have emerged in connection with DNA at-home test kits.
Recent DNA test kit discoveries with potential legal implications
- Police used a technique known as familial searching to match DNA from the scene of a murder with biological relatives of the found DNA. According to Popular Science, “Could Having Your DNA Tested Land You In Court?,” the 1996 murder investigation led police to arrest Michael Usry, when the crime scene DNA was found to match portions of his father’s DNA, which was in a DNA database because of an at-home DNA test. In the end, Usry’s DNA did not match the sample taken from the crime scene, but the implications are no small consideration.
- More recently, in the famed case of the Golden State Killer, experts say genetic relatives led police to the suspect. In “How Did They Catch the Golden State Killer? An Online DNA Service and His Genetic Relatives Revealed the Suspect,” time.com reports that police caught the suspected killer by matching DNA from crime scenes with data in an online genealogy database.
- In Minnesota, KARE 11 television recently reported that at the age of 72, two women learned that they had been switched at birth, because of an at-home DNA test. That’s just one example of the emerging ripple effects. When results can show who your relatives are, surprises can emerge, sometimes rewriting, and correcting, family histories. Unknown siblings are discovered. Biological parents are found after adoptions, or parents are found not to be biological parents, after all.
- Because DNA test kits can gather and analyze health risk factor data, some experts worry that the information could put consumers at risk. Already life insurance, long-term care insurance and disability insurance companies have the right to request results of an at-home DNA test kit, and deny consumer coverage based on those results, according to fastcompany.com, “If You Want Life Insurance, Think Twice Before Getting A Genetic Test.”
Your genetic code: share with care
For now, consumers may find some comfort in knowing that the Genetic Information Nondiscrimination Act of 2008 keeps health insurance companies and employers from using your DNA in multiple ways. But it’s important to remember that laws can be impermanent, and changes may affect your control of your genetic data and how it is used. More, even if a test kit supplier agrees to destroy the sample of your DNA, the risk that hackers could obtain that information should also be taken into consideration. Consumers should take great care in considering these complex and emerging issues connected with at-home DNA test kits.
By Joe Veenstra, La Crosse WI consumer rights attorney at Johns, Flaherty & Collins, SC. For a consumer rights attorney in La Crosse WI, contact him at 608-784-5678.