DNA tests from vendors such as 23andMe and Ancestry were popular purchases during the 2017 Christmas season, with Ancestry selling about 1.5 million kits between Black Friday and Cyber Monday.
Although many people view these tests as a simple way to find out about their ethnic heritage and genetics, the results can have unanticipated effects. One man wrote to Dear Abby that the tests he bought for himself and his adult children as, “a fun exercise we all could share,” revealed that his youngest son is not biologically related to him. Now he is trying to figure out how to handle this news.
If you have a positive result, you may need to share that with your five sisters. And are you prepared to do that?
There are other results that can be just as disturbing. A consumer may believe he is ready to learn about his risk for certain diseases, but have a hard time processing the information when it comes. There are also family dynamics involved. Mary Freivogel, president of the National Society of Genetic Counselors points out, “If you have a positive result, you may need to share that with your five sisters. And are you prepared to do that?” Although counselors are often available at clinics, home testers are usually on their own.
The Federal Trade Commission recommends that consumers consider the privacy implications of having your full genetic code digitized and stored in a database. They advise taking the time to read and understand the vendor’s privacy policy. Most vendors offer an array of options regarding privacy. Rather than selecting the default settings, the FTC says it is prudent to “select more protective options initially and revisit your choices” after becoming more familiar with how the site operates.
Many of the companies doing genetic testing share data with other parties for research purposes, with the consent of the consumer. Ancestry says they, “do not sell your data to third parties or share it with researchers without your consent.” But NBCNews points out that, “usually, a broad consent is part of the initial contract a consumer makes with a company when he or she submits the test for analysis.”
Data shared with third parties is anonymized, but it is possible that the data could be hacked and genetic markers used to identify its owners, according to Peter Pitts of the Center for Medicine in the Public Interest.
A big question is whether law enforcement will have access to the data, and under what conditions. Law enforcement agencies may seek to obtain information from genetic testing companies by getting a search warrant, and each company has a policy regarding compliance with these requests. Whether you have used one of these services or not, law enforcement may be able to identify you through “familial matching” if one of your family members has their information in a genetic database.
Genetic testing promises answers, but it may raise more questions than it answers.
