You spit in a test tube and mail it to Ancestry.com, 23andMe, or some other genealogy service. You get the results back—find out your heritage, your risk for diseases, and even learn about a cousin you never knew you had—all for about $99. But then what happens to the DNA sample?
Many genealogy services, including 23andMe and Ancestry.com, store your saliva for an indefinite period, unless you tell them not to. Both companies say they’ll never share people’s genetic data with insurance providers or employers, who could potentially discriminate against people based on their DNA. But 23andMe does sell access to people’s DNA to a pharmaceutical company. Ancestry.com shares it with another medical research company. In fact, this is a big part of how many genealogy services make money.
Finding a Cure for Cancer?
Pharmaceutical companies use this surplus of genetic data to look for mutations in genes that could lead to cures for diseases, such as cancers.
You may not mind having your genetic data shared with medical companies if it could help result in a cure for cancer. But many legal experts are concerned. They point out that these companies stand to profit off the drugs they create based on your DNA without sharing any of that money with you. Privacy experts are also concerned about what might happen to people’s genetic material if these companies are sold or their privacy policies change. The Federal Trade Commission is reportedly investigating genealogy services’ privacy policies.
Ancestry.com and 23andMe ask for your permission in their terms and conditions to share your DNA. But it’s a lengthy document that many people accept without actually reading.
“If you’re comfortable with somebody else making money off your genetic material, then that’s fine. You can give it away,” says Joel Winston, a privacy lawyer. “But you really have to read those terms that are in there to see what you’re agreeing to.”