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The direct-to-consumer genetic testing<\/a> company 23andMe has filed for bankruptcy. This means that the fate of its assets\u2014including the genetic information of some 15 million users and, by inference, their blood relatives<\/a>\u2014is up in the air. Legal experts, including California\u2019s attorney general Rob Bonta, are urging consumers to delete their information from the site to protect it from potential misuse.<\/a><\/p>\n The company \u201c23andMe sits on this massive amount of data\u201d that is extremely sensitive, says Sara Gerke, a professor at the University of Illinois College of Law, who focuses on health and privacy law. The case highlights the need for federal laws to ensure people\u2019s genetic privacy, Gerke adds, because right now \u201cit literally comes down to where you are living, whether you have proper rights over what\u2019s going to happen to your data.\u201d<\/p>\n If you’re enjoying this article, consider supporting our award-winning journalism by subscribing<\/a>. By purchasing a subscription you are helping to ensure the future of impactful stories about the discoveries and ideas shaping our world today.<\/p>\n The privacy policy of 23andMe<\/a> allows for the sale of data in the event of bankruptcy, but it also allows customers to delete their accounts, along with their information. The policy also says, however, that the company may nonetheless retain some information \u201cfor compliance with applicable legal obligations,\u201d potentially including one\u2019s date of birth, sex and some genetic information.<\/p>\n \u201cWe remain committed to our users\u2019 privacy and to being transparent with our customers about how their data is managed,\u201d the company said in an open letter to its users<\/a>.<\/p>\n At least 13 states require companies to obtain consent from users before transferring their genetic data in the event of an acquisition, according to the Electronic Frontier Foundation<\/a>. And in 19 states, companies must delete users\u2019 data upon their request.<\/p>\n \u201cIn many states, nothing is going to kick in\u201d to protect users, Gerke says. \u201cThat means it goes back to the privacy statement.\u201d<\/p>\n If 23andMe is sold, the buyer would initially be required to comply with the original privacy policy, which limits how customers\u2019 data can be shared. But it could then make changes to the policy.<\/p>\n \u201cIf individuals are not reading what is in [the new privacy policy],\u201d Gerke warns, \u201cthen they might have just sold away their data.\u201d<\/p>\n Those changes could potentially be quite substantial, Gerke says. For example, 23andMe currently says it won\u2019t share data with insurance companies. A buyer could update the policy to allow for the sale or sharing of data, for example, with life, long-term care or disability insurance companies, she explains. (The new owner could not share the data with health insurers, however, because this would violate a federal nondiscrimination law called the Genetic Information Nondiscrimination Act, or GINA.)<\/p>\n If 23andMe is not sold to another company, its assets could be sold off to repay creditors. \u201cThe biggest asset that they have is all of this information,\u201d says Mark Rothstein, a bioethicist at the University of Louisville.<\/p>\n For now, \u201cthere are no changes to the way [23andMe stores, manages or protects] customer data,\u201d according to a press release that announced the bankruptcy<\/a>.<\/p>\n The fate of 23andMe\u2019s data may also impact the blood relatives of its customers. \u201cNot only [does your DNA sample] have information about you but also about your close relatives,\u201d Rothstein says.<\/p>\n This is a long-standing bioethical question regarding genetic testing, but \u201cit is an even more problematic question now, if this data might get into hands that we don\u2019t want it in,\u201d Gerke says.<\/p>\nWhat\u2019s Protecting Your Genetic Data?<\/b><\/h2>\n
On supporting science journalism<\/h2>\n
What Happens Next?<\/b><\/h2>\n
The Bigger Ethical Questions<\/b><\/h2>\n