This past Monday marked the formal launch of the “Personal Genome Project,” a bold initiative led by George Church (Harvard University) to sequence and interpret 100,000 individuals’ complete DNA code.
Along with an analysis of each volunteer’s DNA, researchers will collect and analyze the volunteer’s medical records, ethnic history, and a wealth of other data ranging from exposures to power lines to personal food preferences (fried, broiled, or barbecued?). The project’s goal is to decipher the role that genes and our environment play in shaping health, behavior, and other traits.
Of concern to some is the fact that all participant data (without participant names) will be freely available on the web. Church believes this is necessary for the project's ultimate success and broad scientific use. But this approach is in sharp contrast to nearly every research study involving health care data, in which stringent data access rules protect volunteers' privacy. Whether or not this hurts volunteer recruiting remains to be seen.
The first 10 individuals enrolled in the project, all experts in genetics and medicine, had to pass a rigorous “entrance exam” consisting of a general genetics literacy test and a thorough understanding of the privacy implications. The steps involved in enrolling in the Personal Genome Project are discussed in this August 2008 Wired Magazine article.
The Personal Genome Project website is here.