Matthew Herper of Forbes.com has posted an interview with Misha Angrist, who is the author of “Here is a Human Being: At the Dawn of Personal Genomics.” The jumping off point here is that Angrist participated in an experiment where not only was his genome sequenced, but it was made public. From there, the interview touches on three things:
1. It’s really cool to be able to see your own sequence data right in front of you.
2. In the not-too-distant future, everyone is going to go through full-genome sequencing.
3. Can, and should, genome data be kept private and anonymous?
Angrist also provides a guest post on the blog Genetic Future in response to a paper in Trends in Genetics. The paper outlines the arguments for, and against, returning genetic data to research participants. The authors take the view that if (and only if) something “life threatening and actionable” is found within an individual’s genome, researchers have the moral obligation to say something but full disclosure is not recommended because it puts full sequence data in the hands of research participants. You can read Angrist’s guest post, but his stance is revealed by a great quote from the Forbes.com interview: “Genetics is too important to be left to geneticists.”
Do you think that complete sequencing data should be fully disclosed to research participants? Would you make your genome public? For more discussion and to participate in a poll, check out The personal genome project, genetic privacy, personal medicine on the blog.
Brendenoord, A.L., Kroes, H.Y., Cuppen, C., Parker, M., van Delden, J.J.M. (2011). Disclosure of individual genetic data to research participants: the debate reconsidered. Trends in Genetics 27: 41-47.