The CEO of 23andMe has recently said she’d consider selling the genetic genealogy testing company–and with it, the sensitive DNA data that it’s collected, and stored, from many of its 15 million customers. Customers and their relatives are rightly concerned. Research has shown that a majority of white Americans can already be identified from just 1.3 million users of a similar service, GEDMatch, due to genetic likenesses, even though GEDMatch has a much smaller database of genetic profiles. 23andMe has about ten times as many customers.
Selling a giant trove of our most sensitive data is a bad idea that the company should avoid at all costs. And for now, the company appears to have backed off its consideration of a third-party buyer. Before 23andMe reconsiders, it should at the very least make a series of privacy commitments to all its users. Those should include:
- Do not consider a sale to any company with ties to law enforcement or a history of security failures.
- Prior to any acquisition, affirmatively ask all users if they would like to delete their information, with an option to download it beforehand.
- Prior to any acquisition, seek affirmative consent from all users before transferring user data. The consent should give people a real choice to say “no.” It should be separate from the privacy policy, contain the name of the acquiring company, and be free of dark patterns.
- Prior to any acquisition, require the buyer to make strong privacy and security commitments. That should include a commitment to not let law enforcement indiscriminately search the database, and to prohibit disclosing any person’s genetic data to law enforcement without a particularized warrant.
- Reconsider your own data retention and sharing policies. People primarily use the service to obtain a genetic test. A survey of 23andMe customers in 2017 and 2018 showed that over 40% were unaware that data sharing was part of the company’s business model.
23andMe is already legally required to provide users in certain states with some of these rights. But 23andMe—and any company considering selling such sensitive data—should go beyond current law to assuage users’ real privacy fears. In addition, lawmakers should continue to pass and strengthen protections for genetic privacy.
Existing users can demand that 23andMe delete their data
The privacy of personal genetic information collected by companies like 23andMe is always going to be at some level of risk, which is why we suggest consumers think very carefully before using such a service. Genetic data is immutable and can reveal very personal details about you and your family members. Data breaches are a serious concern wherever sensitive data is stored, and last year’s breach of 23andMe exposed personal information from nearly half of its customers. The data can be abused by law enforcement to indiscriminately search for evidence of a crime. Although 23andMe’s policies require a warrant before releasing information to the police, some other companies do not. In addition, the private sector could use your information to discriminate against you. Thankfully, existing law prevents genetic discrimination in health insurance and employment.
What Happens to My Genetic Data If 23andMe is Sold to Another Company?
In the event of an acquisition or liquidation through bankruptcy, 23andMe must still obtain separate consent from users in about a dozen states before it could transfer their genetic data to an acquiring company. Users in those states could simply refuse. In addition, many people in the United States are legally allowed to access and delete their data either before or after any acquisition. Separately, the buyer of 23andMe would, at a minimum, have to comply with existing genetic privacy laws and 23andMe’s current privacy policies. It would be up to regulators to enforce many of these protections.
Below is a general legal lay of the land, as we understand it.
- 23andMe must obtain consent from many users before transferring their data in an acquisition. Those users could simply refuse. At least a dozen states have passed consumer data privacy laws specific to genetic privacy. For example, Montana’s 2023 law would require consent to be separate from other documents and to list the buyer’s name. While the consent requirements vary slightly, similar laws exist in Alabama, Arizona, California, Kentucky, Nebraska, Maryland, Minnesota, Tennessee, Texas, Virginia, Utah, Wyoming. Specifically, Wyoming’s law has a private right of action, which allows consumers to defend their own rights in court.
- Many users have the legal right to access and delete their data stored with 23andMe before or after an acquisition. About 19 states have comprehensive privacy laws which give users deletion and access rights. Many of those laws also classify genetic data as sensitive and require companies to obtain consent to process it. Unfortunately, most if not all of these laws allow companies like 23andMe to freely transfer user data as part of a merger, acquisition, or bankruptcy.
- 23andMe must comply with its own privacy policy. Otherwise, the company could be sanctioned for engaging in deceptive practices. Unfortunately, its current privacy policy allows for transfers of data in the event of a merger, acquisition, or bankruptcy, merger, or acquisition.
- Any buyer of 23andMe would likely have to offer existing users privacy rights that are equal or greater to the ones offered now, unless the buyer obtains new consent. The Federal Trade Commission has warned companies not to engage in the unfair practice of quietly reducing privacy protections of user data after an acquisition. The buyer would also have to comply with the web of comprehensive and genetic-specific state privacy laws mentioned above.
- The federal Genetic Information Nondiscrimination Act of 2008 prevents genetic-based discrimination by health insurers and employers.
What Can You Do to Protect Your Genetic Data Now?
Existing users can demand that 23andMe delete their data or revoke some of their past consent to research.
If you don’t feel comfortable with a potential sale, you can consider downloading a local copy of your information to create a personal archive, and then deleting your 23andMe account. Doing so will remove all your information from 23andMe, and if you haven’t already requested it, the company will also destroy your genetic sample. Deleting your account will also remove any genetic information from future research projects, though there is no way to remove anything that’s already been shared. We’ve put together directions for archiving and deleting your account here. When you get your archived account information, some of your data will be in more readable formats than others. For example, your “Reports Summary” will arrive as a PDF that’s easy to read and includes information about traits and your ancestry report. Other information, like the family tree, arrives in a less readable format, like a JSON file.
You also may be one of the 80% or so of users who consented to having your genetic data analyzed for medical research. You can revoke your consent to future research as well by sending an email. Under this program, third-party researchers who conduct analyses on that data have access to this information, as well as some data from additional surveys and other information you provide. Third-party researchers include non-profits, pharmaceutical companies like GlaxoSmithKline, and research institutions. 23andMe has used this data to publish research on diseases like Parkinson’s. According to the company, this data is deidentified, or stripped of obvious identifying information such as your name and contact information. However, genetic data cannot truly be de-identified. Even if separated from obvious identifiers like name, it is still forever linked to only one person in the world. And at least one study has shown that, when combined with data from GenBank, a National Institutes of Health genetic sequence database, data from some genealogical databases can result in the possibility of re-identification.
What Can 23andMe, Regulators, and Lawmakers Do?
Acquisition talk about a company with a giant database of sensitive data should be a wakeup call for lawmakers and regulators to act
As mentioned above, 23andMe must follow existing law. And it should make a series of additional commitments before ever reconsidering a sale. Most importantly, it must give every user a real choice to say “no” to a data transfer and ensure that any buyer makes real privacy commitments. Other consumer genetic genealogy companies should proactively take these steps as well. Companies should be crystal clear about where the information goes and how it’s used, and they should require an individualized warrant before allowing police to comb through their database.
Government regulators should closely monitor the company’s plans and press the company to explain how it will protect user data in the event of a transfer of ownership—similar to the FTC’s scrutiny of the prior Facebook WhatsApp acquisition.
Lawmakers should also work to pass stronger comprehensive privacy protections in general and genetic privacy protections in particular. While many of the state-based genetic privacy laws are a good start, they generally lack a private right of action and only protect a slice of the U.S. population. EFF has long advocated for a strong federal privacy law that includes a private right of action.
Our DNA is quite literally what makes us human. It is inherently personal and deeply revealing, not just of ourselves but our genetic relatives as well, making it deserving of the strongest privacy protections. Acquisition talk about a company with a giant database of sensitive data should be a wakeup call for lawmakers and regulators to act, and when they do, EFF will be ready to support them.
This post was originally published on here
