Home PublicationsCommentary A New Wave of Techno-Panic is Coming to Consumer Genomics

A New Wave of Techno-Panic is Coming to Consumer Genomics

by Joshua New
Panic button

In a recent Medium post, consumer protection lawyer Joel Winston made a series of startling claims about Ancestry.com’s genetic testing service AncestryDNA. According to Winston, consumers who buy AncestryDNA’s services not only give up ownership of their very DNA for life, but their own DNA could be used to harm them and their relatives and they have waived their legal rights to do anything about it. Winston’s claims are so glaringly disingenuous that it seems his article was engineered to maximize Internet outrage rather than help consumers. In truth, AncestryDNA’s policies are wholly benign and ordinary, and the backlash Winston’s post generated could have substantial negative effects on valuable medical research and actually harm consumers instead of protecting them.

Winston’s arguments raising the alarm about AncestryDNA are based on three main provisions in Ancestry DNA’s Privacy Policy and Terms of Service, the first of which describes the type of license AncestryDNA customers agree to grant the company governing the use of the sequencing and analysis it performs on their DNA. Winston quotes AncestryDNA’s terms of service which state that users agree to “grant AncestryDNA and the Ancestry Group Companies a perpetual, royalty-free, world-wide, transferable license to use your DNA,” and yet Winston also states that “Ancestry.com takes ownership of your DNA forever.”[1] Ownership and a license to use data are very different things but Winston deliberately conflates the two, stating that “Ancestry.com will own your data even after you’re dead.” Implying that these are equivalent concepts is the first sign that Winston is being disingenuous—the value proposition Ancestry is offering to its customers is access to its service in exchange for a fee and genetic information that it can sell or share in a de-identified and aggregated format with medical researchers. Customers still own their DNA but the terms of service allow Ancestry to use it for commercial or research purposes—a fact that Winston deliberately ignores by stating that agreeing to these conditions “means a loss of complete ownership and control.” In reality customers simply give up exclusive access to this data, but they still own it and are free to withdraw their consent for this data to be used in commercial research, despite Winston’s implication that this process is designed to be challenging (customers literally just need to call a customer service phone number to withdraw their data from its service).

Second, Winston harps on Ancestry’s disclaimer that a customer’s genetic data could be made publicly available in the event of a data breach or through theft of DNA samples, which could lead to undesirable outcomes such as discrimination or loss of insurance coverage. But this is a reasonable warning to inform consumers of worst-case scenarios. The fact that Ancestry responsibly discloses this information to consumers should not be taken as an indication that the company is engaged in anything nefarious any more than the appearance of warning labels that ladders “may cause serious injury or death” should suggest that a ladder company is trying to harm people changing light bulbs. A sober look at Ancestry’s policies shows that the company does not share customer data with insurance companies, employers, law enforcement (unless legally required to do so), or other groups that could use this data to harm customers. Nonetheless, Winston cites several examples of how a person was harmed when their genetic information came to light. These are unfortunate cases, such as when Sergeant Cleon Brown of the Hastings, Michigan Police Department experienced racial discrimination after voluntary sharing information about his African ancestry, which he learned from AncestryDNA, yet they have nothing to do with Ancestry’s services—they are criticisms of other people making decisions based on their own biases, and of policies that allow for such discrimination. For example, in the United States the Genetic Information Nondiscrimination Act prohibits health insurers and most employers from accessing and using someone’s genetic data without their consent, but it does not prevent life insurance companies from discriminating against customers based on their genetic data. Thus this entire portion of Winston’s argument amounts to a panic-inducing non-sequitur.

The final portion of Winston’s argument focuses on the waiver of liability customers grant Ancestry in the event any harm comes to them through the use of AncestryDNA’s services. This is a standard legal disclaimer that could easily apply to the use of roller coasters and over-the-counter medicine just as it could for a consumer genomics company. After portraying this in a negative light, Winston then attempts to tie this to the “final indignity” that customers agree to mandatory arbitration and that they will not join a class action suit in the event of a legal dispute. Regardless of whether or not these practices are consumer-friendly, they have nothing to do with how Ancestry uses customer’s genetic data, and attempting to link them is wildly alarmist.

The language Winston uses is a deliberate attempt to alarm people who lack the contextual knowledge to understand that there is nothing sinister going on here. In a response to Winston’s piece, Ancestry’s chief privacy officer Eric Heath points this out, stating “When I read the article, it became immediately obvious why consumers would have concerns: The article is inflammatory and inaccurate, and contains wild scenarios of the ‘did you know [insert scary hypothetical]’ variety. If you don’t read our terms, and don’t spend a lot of time with our products and services, you might find this article alarming.” Winston omits key information throughout his article and phrases statements to imply nefarious motivations. For example, Winston starts off a paragraph with “Buried in the ‘Informed Consent’ section…”—as if Ancestry was trying to hide it, despite the fact that the “Informed Consent” section is clearly articulated and easily accessible on Ancestry’s website.

Winston’s disingenuous article is the same familiar strain of techno-panic that caused outrage in parents about the practice of storing student data in the cloud and prompted privacy advocates to raise hysterical dystopian concerns about the use of RFID tags. Just because this particular service involves a relatively new type of technology—genetic sequencing—does not make Ancestry’s policies about data usage cause for particular scrutiny. Should Winston’s article prompt large amounts of people to exit their relationship with Ancestry and avoid seeking consumer genomics services in the future, Ancestry and other similar companies would be greatly limited in their ability to develop new services and make genetic data available for research that could advance treatments for diseases such as Lupus, age-related illnesses, and cancer. As a consumer protection lawyer, Winston should focus more on educating consumers about these kinds of services and going after companies that are actually harming consumers, rather than needlessly scaring people on the Internet.

[1] Since Winston published his article, Ancestry has clarified their Terms and Conditions, but there were no substantive changes.

Image: Krysten Newby

You may also like

Show Buttons
Hide Buttons