FTC issues privacy warning over direct-to-consumer genetic tests

Lesley Fair, senior attorney of the Bureau of Consumer Protection at the Federal Trade Commission, laid out four steps consumers interested in purchasing at-home genetic test kits should take to strengthen the privacy of their heritage and health data in an agency blog post Dec. 12.

Here are the four steps outlined in the blog post.

1. Comparison shop. In addition to price and accuracy, consumers should also consider each company's privacy policy. "Scrutinize each company's website for details about what they do with your personal data," Ms. Fair wrote. "Rather than just clicking 'I accept,' take the time to understand how your health, genetic and other sensitive information will be used and shared."

2. Inspect account options. Most companies offer purchasers a range of options about how protected their personal information is. "Will your profile be available to others online? Can users send you personal messages? A company’s out-of-the-box defaults often aren't the most private options, so it's unwise simply to accept a site's automatic settings," Ms. Fair wrote.

3. Be cognizant of cybersecurity. Ms. Fair suggested consumers "reflect on [their] personal approach" to the inherent risk of unauthorized access to any sensitive information held online. Regardless of the company a consumer chooses, there is always some degree of risk for a cyberattack. "Hacks happen," she emphasized.

4. Report concerns to the FTC. If a genetic testing company doesn't live up to its privacy standards, Ms. Fair recommended a consumer reach out to the agency directly. "We've brought dozens of cases challenging deceptive or unfair practices related to consumer privacy and data security — including a settlement with a business that sold products based on at-home genetic testing," she wrote.

"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," Ms. Fair wrote, adding consumers who gift genetic test kits to others should also print the blog post to share with the recipient.

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