Don’t Blame 23andMe for the Federal Government’s Lack of Clear Data Privacy Rules
A lawsuit against genomics firm 23andMe is stirring a debate about what the proper role of government is in regulating how private companies use sensitive data.
In June, 27 states filed a lawsuit against 23andMe to block the sale of the company’s customer data without their consent. The firm filed for Chapter 11 bankruptcy in March, and recently, Regeneron Pharmaceuticals (a biotechnology firm) announced that it would buy the company.
Data obtained from 23andMe can “identify and track those who are related to the 23andMe consumer—including future generations yet unborn,” according to the lawsuit. The sheer magnitude of this genetic information, therefore, impacts those “who have no awareness of the sale as well as humans who do not even exist yet.” The lawsuit alleges that with access to a user’s DNA, the “customer’s genome could remain in existence in corporate hands and subject to use (ranging from research to cloning) long after future generations of the 23andMe’s consumer have passed away.”
The plaintiffs argue that 23andMe customers “have inherent common law rights of ownership or control in their biological material” and that the company “lacks sufficient rights to control and transfer” these materials “absent the customer’s express, informed, affirmative consent to the proposed sale/transfer.” As such, “23andMe must honor its representations to consumers by requiring ‘explicit consent’ to the proposed sale based on its ‘Privacy’ webpage, which assures customers that their DNA and health insights, entrust
Article from Reason.com
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