Genomes Go Public

Scientific studies into human diseases or conditions rely heavily on volunteer participation and one of the usual prices for said participation is anonymity. In the past, anonymity has been fairly easy to guarantee. It's very hard to connect "Subject A, with weird disease X" to Bob Smith because, even if weird disease X is very rare, there are likely hundreds or thousands of people with disease X. Since only details relevant to the study are collected, there simply aren't enough identifying features of Subject A to definitively figure out his identity.

This simply isn't the case in genomics. By definition, genomics is the study of genomes. By studying someone's whole genome, we can elucidate the potential connection between the disease of interest and a person's genes, as well as identifying mitigating factors which can affect not only the course of the disease but also factors affecting treatment. The problem is that a person's genome is fairly unique. While Bob will still likely have functional anonymity, as it is unlikely that someone will go to the trouble to obtain an uncontaminated DNA sample and run expensive tests to connect him to the elusive Subject A, he does not have actual anonymity. Researchers must struggle with how to protect Bob's personal information while at the same time advancing their research. This raises new ethical dilemmas when you realize that one of the methods of advancing research is to share data between collaborating labs - but Bob may never interact with researchers beyond the first lab with which he was associated and may not be aware of how his information is spread.

There's actually a lot of thought and action taken on this, so please don't assume that personal information is being thrown haphazardly about in the wild scientific frontier. I bring it up to provide a bit of background on a novel solution to the problem, in which the guarantee of anonymity is abandoned altogether. The Personal Genome Project is project where volunteers can essentially donate their genomes to research. As it says on their frontpage:

We believe individuals from the general public have a vital role to play in making personal genomes useful. We are recruiting volunteers who are willing to share their genome sequence and many types of personal information with the research community and the general public, so that together we will be better able to advance our understanding of genetic and environmental contributions to human traits and to improve our ability to diagnose, treat, and prevent illness.

Scroll down to the bottom of the frontpage and you'll notice a CC0 universal waiver logo. In essence, the Personal Genome Project is making its research data as close to the public domain as it legally can. If you want, you can take a look at the first ten participants, called the PGP-10, and get not only bios but pictures. Ever wanted to know George Church's health history? There it is. Or how about Steven Pinker? Here you go.

As I understand it, becoming a part of the Personal Genome Project isn't as simple as sending a random tissue sample. There's a rather exacting consent process which requires, among other things, an entrance exam on which you must get 100% so they can be sure that you fully understand what you're getting into.

I suppose that, given the increasing prevalence of information sharing, I shouldn't be surprised that someone would try a genome project with the express purpose of making data public. It's an exciting prospect, but it's also kind of scary. Do you think it's a good idea? Would you participate? Would you encourage others to participate? What pitfalls do you think might occur? I'd love your comments!