22 May 2017
ByAppeared in BioNews 901
Customers of Ancestry's consumer DNA tests may be unaware of what they have signed, a US lawyer has suggested.
Ancestry – the online family history and genealogy company – launched AncestryDNA in 2012 as part of a growing market in direct-to-consumer DNA tests. Tests cost around US $100 / UK £80, and customers can sign up online and send away a small vial of saliva for testing.
Joel Winston, a lawyer specialising in consumer protection and former Deputy Attorney General of New Jersey, has written an article pointing out that AncestryDNA's 'small-print' contains clauses that some customers may find worrying.
Winston draws attention to a passage in the terms and conditions: 'By submitting DNA to AncestryDNA, you grant [us] a perpetual, royalty-free, world-wide, transferable license to use your DNA… 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.'
According to Winston, this means that Ancestry can use a customer's DNA for research or any other purposes, during life and after their death, without their being entitled to any proceeds generated by this use.
Winston is also concerned about Informed Consent agreement: 'There is a potential risk that third parties could identify you from research that is made publicly available …If Data are obtained through these methods, it is possible that information about you or a genetic relative could be revealed, such as that you or a relative are carriers of a particular disease. That information could be used by insurers to deny you insurance coverage, by law enforcement agencies to identify you or your relatives, and in some places, the data could be used by employers to deny employment.'
Ancestry make clear that data used in research is always anonymised, but the nature of DNA is such that a determined third party may be able to identify an individual, especially if they or their family members have samples stored on other genetic databases. Knowing one person's genetic information through genome sequencing will always allow inferences to be made about a relative's genome, even if the relative has never given consent.
Ancestry has responded to the article in a blog post, in which they stress to customers that 'We have not sold or provided your genetic data to insurers, employers, or third-party marketers. We protect our users within the law, and require valid legal process such as a warrant before providing any data to law enforcement.'
They also assure customers that 'You can request that we delete your data and destroy your physical sample at any time and we will do so.'