The Fine Print: Understanding Your DNA Rights After Testing

Courtesy of 23andMe via Facebook
Courtesy of 23andMe via Facebook

If you plan to take a DNA test to determine your ancestry, legal, privacy and other experts caution you to read the fine print before you sign away your rights.

A November 2017 NBC News story, authored by Maggie Fox, pointed out that in signing on the dotted lines, individuals give away the most important thing they own: their genetic fingerprint or DNA.

“It sounds like such a fun gift idea: a DNA test that can tell your sister-in-law whether she really has Native American ancestors, or one that promises to craft your friend a perfect diet based on his genes,” Fox wrote. “Home DNA tests are likely a big seller, but privacy experts say consumers should be cautious. The problem is that when you send away a tube of your spit or 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.”

Peter Pitts president and co-founder of the Center for Medicine in the Public Interest concurs, saying your saliva “is the most valuable thing you own.”

A 2008 law called the Genetic Information Nondiscrimination Act, according to Pitts, forbids discrimination based on genetic information and includes firing someone because they have a gene that predisposes them to an expensive disease. But it would also be hard to prove an employer did that, said Pitts.

“You don’t want that information displayed to other people. Ultimately you don’t want an employer to have access to your information.”

Still, as more Americans take advantage of DNA testing, concerns over privacy and ownership, particularly in the wake of the book and film The Immortal Life of Henrietta Lacks, which documents the lifesaving HeLa cell medical research gained through harvesting cancer cells from a lone African American woman in 1951, have risen. Lacks gave neither her expressed consent for the procedure that removed the two cervical samples, nor received compensation for what later formed a trillion-dollar research and treatment platform.

Those offering saliva for ancestry and DNA results do, in signing a disclosure, forfeit a number of things, including compensation if a company conducts scientific research with their genetic material and profits from their DNA.

Joel Winston, a consumer protection lawyer who writes a column for ThinkProgress, notes that AncestryDNA takes ownership of submitters’ DNA in perpetuity. He quoted from the contract: “Specifically, by submitting DNA to AncestryDNA, you agree to “grant AncestryDNA and the Ancestry Group Companies a perpetual, royalty-free, world-wide, transferable license to use your DNA, and any DNA you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered.”

Winston added that the AncestryDNA terms also require customers to confirm that they “understand that by providing any DNA to us, you acquire no rights in any research or commercial products that may be developed by AncestryDNA that may relate to or otherwise embody your DNA.” Essentially, you still own your DNA, but so does You can commercialize your own DNA for money, but is also allowed to monetize your DNA for millions of dollars and doesn’t have to compensate you.”

With all these potential pitfalls, the warning is Caveat Emptor – Let the Buyer Beware. So, please take the time to read the small print.


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