Companies are advertising at-home DNA test kits that promise insights into your past and your future. They claim to answer questions such as where did my ancestors come from and do I have any genetic markers for certain medical conditions.
If you’re thinking about buying a kit for yourself or a family member, the Federal Trade Commission has advice about protecting the privacy of the sensitive information that DNA tests reveal.
Although most tests require only a swab of the cheek, that tiny sample can disclose your biological building blocks. The data can be informative, but a concern for consumers should be who else could have access to information about your heritage and your health, said Lesley Fair, senior attorney for the FTC's Bureau of Consumer Protection.
Comparison shop about privacy. Companies offer similar services, but price and performance are only two of the comparisons you should make before purchase. The other key comparison is privacy. Examine each company’s website for details about what they do with your personal data. Rather than just clicking “I accept,” take the time to understand how your health, genetic, and other sensitive information will be used and shared. Don’t buy a kit until you have a clear understanding of the company’s practices.
Choose your account options carefully. Most testing companies offer options about how public – or how protected – users want to keep their personal information. Will your profile be available to others online? Can users send you personal messages? A company’s defaults often aren’t the most private options, so it’s unwise to accept a site’s automatic settings. A better approach is to choose more protective options initially and revisit your choices once you’ve become familiar with how the site operates.
Recognize the risks. The website could be hacked. Before deciding to use a DNA test kit, think about your personal approach to the risk of unauthorized access that accompanies the use of any online service that maintains sensitive information about you.
Report your concerns. If you think a genetic testing company isn’t living up to its promises, you can file a complaint with the FTC. The agency has 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, but allegedly failed to provide reasonable security for consumers’ personal information.
If you’re giving a test kit as a gift, print this article for the recipient and share other consumer information from FTC about DNA test kits.