“Click Here to Agree” – Do DNA Websites Own Your DNA…Forever?
More than 3 million people have utilized the groundbreaking technology provided by Ancestry.com’s DNA test for ancestry and genealogy, AncestryDNA, with an increase in use in the last couple of years. With the hopes of discovering forgotten family histories, ethnic backgrounds, and genetic predispositions, users have willingly agreed to the online policy statements or terms and conditions without knowing the potential consequences. Recently, three key terms to which every customer must agree have come into question regarding genetic ownership and the uncertain ramifications thereafter.
AncestryDNA requires its customers to comply with the following:
1) AncestryDNA will gain limitless royalty-free license of any DNA submitted;
2) AncestryDNA possesses the right to submit DNA for any monetary gain or adversely against customers; and
3) the customer voluntarily waives all legal rights to file a lawsuit and instead must participate in mandatory binding arbitration.
When it comes to genetic ownership, what does this all mean exactly?
Terms of service are rarely written with the user’s best interests in mind. One implication of accepting such terms is that AncestryDNA becomes the co-owner to what makes up who you are genetically and sole owner after you die. AncestryDNA, whether it chooses to excerise its right to do so, arguably then has the ability to use your DNA for any profit and would not be required to compensate individuals for use.
To many, the most concerning implication is the potential use of the AncestryDNA database by insurance companies to validate rejection of coverage. One unfortunate woman, Theresa Morelli, experienced a cancellation of insurance coverage after the insurance agency discovered her relative having been diagnosed with Huntington’s Disease. While she was not currently diagnosed, she was dropped from coverage at the possibility. Arguably, had her DNA not been co-owned and stored beyond her knowledge, she would not have, in all likelihood, dealt with this troubling situation. The most improbable scenario of DNA use to solve criminal cases is also potentially implicated through the existence of this vast collection.
Finally, customers would lose the ability to file a claim against AncestryDNA should a violation occur, and the only remedy for any customer would be mandatory binding arbitration where the settlement may be small in nature without any hope of changing the outcome.
However, since these policy and terms have been exposed, AncestryDNA has published reassurance that customers have nothing to fear from “unlikely” risks and even changed some terms and conditions.
After all is said and done, disputes over future DNA ownership and use may this serve as a reminder for users to read all privacy policies/terms and conditions before blindly clicking “I agree.”