The Privacy Risks of DNA Testing

Whether your ancestors came to America within the last century or migrated across a land bridge in some ancient ice age, we all love to explore and celebrate our roots, and the hot new way to do that is through DNA testing. Learning more about your ancestry may seem like solving an exciting personal mystery and, some DNA tests can also help predict your risks of certain diseases, which might allow you to take preventive measures... But it isn’t as simple and harmless as advertised. There can be a privacy downside to DNA testing. Here’s what you need to know before sending in your DNA sample.

Companies that offer DNA testing to consumers (as opposed to medical or forensic DNA labs) can use your DNA information in several ways. Of course, they provide the reports that you’ve ordered. Many will compare your DNA with other people in their database and try to sell you services to explore your ancestry and locate possible relatives. They may also share your information with medical research companies, law enforcement, and other businesses.

Here are some of the things that could be done with your DNA information:

• Your DNA data, together with that of millions of others, could help researchers find a cure for Alzheimer’s disease or cancer. Wouldn’t you feel proud?
• Medical insurance companies could buy the data, and you could be turned down for insurance because you have a genetic risk for a disease. This has happened to some people already, due to loopholes in medical privacy laws.
• Law enforcement could access the data and you could be erroneously matched with a DNA sample from a crime scene. This has also happened, usually due to data entry errors when the DNA report was put into a database.

If you’re dying to know more about your family roots or genetic risks, just research carefully before you choose a DNA testing company. For example, until recently, AncestryDNA’s Terms of Service stated that the company has “a perpetual, royalty-free, world-wide, transferable license to use your DNA.” This includes not only the data from your DNA test but your actual saliva sample. (They have since changed their terms, but a recent Snopes article explains why some legal experts are still concerned.) In comparison, the terms of service at 23andMe.com state that your DNA data, without your personal information, may be aggregated with other people’s and shared with medical researchers. However, their policy clearly states they won’t disclose your genetic or other information you provide without your consent unless required by law—for example, in response to a court order.

In addition to satisfying our curiosity, DNA testing is leading medical researchers toward amazing cures and medical treatments. But it’s also a brave new world in terms of privacy. You probably won’t meet a clone made from your DNA sample anytime soon, but you should still aim to understand how your DNA information could be used in the future.