Who owns the results of genetic testing?

DNA and genetic testing are big business. But there are real questions about privacy and about what happens to your genetic information after you get tested. Recently the DNA testing company 23andMe partnered with pharmaceutical giant GlaxoSmithKline to develop personalized drugs and research treatment for diseases like lupus and Parkinson's. Jen King, director of consumer privacy at the Center for Internet and Society at Stanford Law School, told Molly Wood that, surprisingly, most people who take DNA tests don't think the data is all that personal. The following is an edited transcript of their conversation.

Jen King: Most of them felt that their genetic data, while it was personal, at the same time it didn't reveal who they really were. One of the other things in my study I looked at was search queries, so when people type a search term into Google, for example, did they consider that more personal than their genetic data? In some cases they did because it really revealed something more about what made them tick, what they were concerned about, what they thought about, what they cared about, whereas their genetic data doesn't tell you anything about that.

Molly Wood: But then you get the news that 23andMe is partnering with a pharmaceutical company to develop drugs based on the DNA data that they got from 23andMe. Do you think that changes the calculation for people?

Read the edited transcript at Marketplace

Focus Area: 

Add new comment

Once you hit Save, your comment will be held for moderation before being published. You will not see a confirmation message once you hit the Save button but please be assured your comment has been submitted and we will review it.
Enter the characters shown in the image.