There have been a number of heated discussions about genetic privacy recently. Lately the discussion of the Henrietta Lacks (HeLa) genome paper erupted into wide-ranging awareness of some of the issues and complexities around genome data and family relationships. The paper by Yaniv Erlich’s team about re-identification of study participants using genealogy site details also spawned a lot of discussion. (You can see Erlich talk about the teams work in this short video: Genome Hacking and Privacy)
As sequencing costs keep dropping, more and more people will be faced with issues around privacy and sharing of their genomic data. What if your sister want to put her data on a genealogy site? Do families have rights to veto that? If we demand that relatives have rights to that–what can adoptees do about their data? Researchers might be able to generate valuable insights about health and illness from the data–but will people feel safe donating to projects?
The Genetic Alliance has been having a webinar series about this topic: What about Privacy and Progress in Whole Genome Sequencing?
The foundation of this series is the report that came out last year, that I reference below. I thought the report was excellent, and I was surprised it didn’t generate much discussion among the genoscenti. I was specifically looking to see what researchers said about it because I find I’m often at odds with people who are genome exhibitionists. I think it’s fine to share your genome with the world if you feel safe doing so. But I don’t think exhibitionists should set the privacy threshold for the rest of us. That’s like letting teenagers pick the Facebook privacy settings for everyone as far as I’m concerned. I don’t expect the data to remain private. I just think there should be barriers to misuse of the information for purposes of discrimination–like banking or credit reports, housing, education, etc.
Anyway–the webinar series continues this week. You can watch the previous two recordings to catch up. Tomorrow (Tuesday April 9) the focus is from the report: Recommendation 1 – Strong baseline protections while promoting data access and sharing. You can sign up over there to be on the webinar while it’s live, or you can check back later for the recording.
Sign up quick link: http://www.geneticalliance.org/webinars.privacy
1Presidential Commission for the Study of Bioethical Issues (2012). Privacy and Progress in Whole Genome Sequencing www.bioethics.gov
2Gymrek, M., McGuire, A., Golan, D., Halperin, E., & Erlich, Y. (2013). Identifying Personal Genomes by Surname Inference Science, 339 (6117), 321-324 DOI: 10.1126/science.1229566