There’s been an explosion in the field of at-home DNA testing kits that Americans can use to trace their ancestry and probe their genetic risks for diseases like Alzheimer’s and Parkinson’s through services such as Ancestry and 23andMe. But the Federal Trade Commission (FTC) is urging Americans to consider potential privacy concerns before buying genetic test kits—particularly if they plan on handing out such DNA tests as holiday gifts this year to family and friends.
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“If you’re thinking about buying a kit for yourself or a family member, the FTC has advice about protecting the privacy of the sensitive information that DNA tests reveal,” wrote the consumer watchdog agency in a post this week.
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“Although most tests require just a swab of the cheek, that tiny sample can disclose the biological building blocks of what makes you you. The data can be very enlightening personally, but a major concern for consumers should be who else could have access to information about your heritage and your health. If you’re thinking about buying an at-home DNA test kit, you owe it to yourself—and to family members who could be affected—to investigate the options thoroughly.”
The FTC’s cautionary advice is fairly thorough, and striking given the growing popularity of DNA testing kits that consumers can get without a doctor’s prescription. (For instance, 23andMe became the first company ever to win FDA clearance for its direct-to-consumer genetic tests with accompanying health risk reports in April 2017.) The agency warns that potential customers should read the fine print on companies’ privacy policies to safeguard their or their families’ genetic privacy, and consider that hacking which exposes sensitive health data is always a concern in the modern digital age.
Firms like Ancestry and 23andMe insist that their privacy policies are robust and that consumers can choose whether or not to share their (anonymized) data for research purposes, such as helping companies create more targeted drugs by harnessing genetic data. But there have also been some reported instances of unintended consequences, even for basic ancestry tests, such as children finding out that their parents aren’t actually their biological parents. Some critics of widely-available consumer DNA test kits have urged automatically pairing such products with access to genetic counselors who can help parse the highly personal information. Proponents argue that, in the 21st century, everyone should have access to something as fundamental as their own biological code.