Brianne Kirkpatrick Williams, MS, LCGC
Should I delete my test account? This question has come with an uptick in frequency given the headlines about 23andMe. It’s a difficult question to answer, because I see the shades of gray needed in the response. Every question is a curveball.
After nearly a decade of managing Watershed DNA, a company that provides genetic counseling services to the DTC genetic testing customers (and their sometimes newly identified relatives!), I have caught more of these curveball questions than Yogi Berra.
We’ve heard from other genetic counselors, like Katie Sagaser, who wrote about this topic in her recent DNA Exchange post. To delete or not to delete is a question to examine carefully, Sagaser argues; it’s one to take seriously. In her compelling and well-referenced post, she posits it’s a political move to delete one’s 23andMe account. What’s happening with the company’s trove of data poses a threat, if it were to fall in the wrong hands.
The events surrounding 23andMe’s Chapter 11 bankruptcy and its auction (and peculiar re-auction) continue to evolve. Most recently, the bankruptcy court approved the purchase of the company by TTAM Research Institute, a nonprofit organization recently opened by cofounder and former CEO of 23andMe, Anne Wojcicki. The website for TTAM (pronounced “tee-tam”) is bare bones, and there is limited information about the nonprofit at this time. One genealogy blogger to follow for updates is Roberta Estes, and a recent radio interview of J9 Austin is a worthy listen. Even the people with an insider’s perspective at 23andMe, which once included me, are likely on the edge of their seats, anticipating what comes next. This uncertainty which I felt intensely seems to extend throughout the political world, our professional space, and for many of us, our own livelihoods and personal lives.
We ought to feel somewhat reassured that bankruptcies in the genetic testing world are not new, and there is precedent to company acquisitions and transfers of genetic data sets. A few examples of this include Invitae, Navigenics, and Pathway Genomics.
What seems different now–and a major reason data privacy is front-page news–is that these events have transpired at a company whose brand has become synonymous with genetic ancestry and self-knowledge. I can’t recall any other DNA company having risen to the level of fame that it’s service is alluded to in an episode of the Simpsons, it’s personal genome service used by supervillain Gru, and it’s most recent news noteworthy enough to mentioned on a late night show by Taylor Tomlinson.
As tens of millions of people have taken consumer DNA tests, and with the media’s mixed portrayal of these tests, more people are starting to ask how these changes might impact them and their data. I’ve received worried texts from family, questions from clients, and handled an inquiry from a reporter at U.S. News and World Report.
Here’s what I think is most important for genetic counselors to understand. This is an attempt to prepare you to field questions on the high points, not to get into the nitty-gritty.
Q: Can I change my mind about sharing my data, or is it too late?
Consumer DNA companies outline in their privacy policies and other fine print documents their plans for customer data. Those details are located on their websites and can change over time. According to the privacy policies and end user agreements for the major players in consumer DNA testing, users have choice and can change permissions to opt in or out of data sharing.
Someone who has tested at 23andMe, for example, can log into their online profile, navigate to account settings, and modify the check boxes. You can fully revoke permission for all use of data moving forward, and even take it one step further and delete the account. This freedom in choice makes it possible for a test-taker to later change their mind.
It’s worth noting that data and account deletion applies moving forward in time, and you can’t go back and change how data has been used in the past. That’s a sticky point with no getting around.
Q: My family member manages my account; should I ask them to do something?
The process of adjusting opt in/opt out selections must be done separately for each test account, meaning if one person manages an entire family under a single account, they must go through and adjust the settings on each tester. This is relevant for my clients who come from the genealogy world because often, one person is the manager of multiple family members and thus responsible for what happens with the data.
Q: Can they do something dangerous with my DNA?
It’s not possible to clone a person or replicate their DNA from a genotype file because too much DNA data is missing. Plus, converting a computer file of genetic markers back into a biological sample isn’t technically possible (yet, as far as I am aware!).
To be serious, though, privacy policies establish parameters around deidentified data. Some of the language in the documents is standard, and we see a lot of similar language across all DNA test companies (and other industries) that promise to protect data, deidentify it before sharing, and only use it for reasons the user has agreed to.
Explaining “deidentified” to a lay audience means taking a detour down the path of describing the difference between sequencing an entire genome and testing a select set of genetic markers via genotyping. I have found this discussion to be well-received and understood by most listeners. After explaining sequencing vs. genotyping, I explain that deidentified genetic markers are of limited value at the level of a single person testing. The real value is in grouping together bunches of deidentified DNA sets and comparing and contrasting the similarities and differences between them.
The other details a customer provides when ordering and registering a kit (name, date of birth, address, credit card number, self-reported ancestry, etc.) is a different story. Most people aren’t asking about that data when they come to a genetic counselor, though; their concern is the DNA.
Q: Do they still have my DNA sample?
Some DNA test companies dispose of a customer’s biological DNA sample once the test has been run, while other companies store the sample with permission. Check on the website or with customer service at your testing company. If you aren’t sure, login and check the permissions section; you’ll see what option you selected at the time of kit registration regarding sample storage. There is a process to request that stored samples be destroyed (unclick a check box).
Q: How will I know they deleted my data and sample?
This is another sticky point. The responsibility for fully completing the deletion process lies entirely with the company, and this is where we see a level of uncertainty and mistrust persist. Some people feel comfortable trusting that a company will follow through as promised, while others tend to remain skeptical.
In my own experience, after requesting sample destruction and deleting multiple DNA test accounts, I did not receive a confirmation email or other notification once I pressed the button to confirm. After deleting my account, my login credentials no longer worked. This has left me feeling a level of ambiguity that is likely shared by other customers. I wish there were some form of communication or other way to “prove” that the follow-through happened on the company’s end.
Q: Should I trust any DNA company with my data?
I don’t have an easy answer for this one, other than it becomes a personal decision to test anywhere, based on an assessment of potential risks and whether they outweigh potential benefits.
Trust in any industrial operation is a bigger question than just one DNA company. As with any institution with which we are willing to share our information, we place our belief in them to “do the right thing.” A non-profit institution (TTAM Research Institute, seemingly an acronym for twenty-three and me) has purchased what was once a for-profit venture (23andMe), apparently to continue the testing and research operations as before. Should we as possible future or past customers and as genetics professionals immediately have more trust because the new to-be owner isn’t a company, it’s a research institute?
Q: Why would anyone do one of those DNA tests anyway? I never would!
For many of my clients — and myself and members of my own family — consumer DNA testing has been incredibly helpful in filling in the gaps in information about family, ancestry, and health that could not be filled in any other way. For the adopted and donor-conceived individuals, people with unknown parentage, unexpected family DNA matches, and those searching for a long-lost relative, there is often no other option than using consumer DNA tests to continue a biological relative search.
Up to now, there has been no other option for a genetic relative finder service or reliable genetic ancestry information without relying on for-profit industry. Perhaps TTAM Research Institute, by entering the space as a non-profit institution, is changing this?
It is completely fine to swear off all genetic testing, and I attempt to validate the “I would never” comments when I hear them…but not without trying to offer a little education, if the listener will receive it. Choosing to fully forego consumer DNA testing is a privilege. It’s a privilege often taken for granted by those who already possess a complete understanding of their genetic identity and do not require genetic testing to fill in the gaps.
Q: Who can I trust with my DNA?
Millions of people trust universities and research institutions and share their DNA and medical history for scientific research. Tens of millions of people trusted consumers DNA test companies enough to choose their services at some point in the past 20 years. But now some of that faith in institutions has eroded due to concerning headlines about bankruptcy and who might take over 23andMe’s data.
I believe that the reputational harm at one well-known company impacts the entire genetic testing industry. There is a lot of rebuilding to be done to create a sense of safety and trust in genetics, to overcome the harm done to consumer trust.
It’s a quandary, and we genetic counselors would do ourselves and our patients and clients a service by viewing one another as members of the same team. It’s not a time for trash-talk from the dugout. It’s a time for banding together across industry, non-profits, research institutions, hospital systems, private practice, and more. “You’ve got to be very careful if you don’t know where you are going,” to quote Yogi, “because you might not get there.”
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