The Personal Genome Project hits the Web

This month, the Personal Genome Project passed an important milestone: 10 people, all of them well-known experts or academics in the fields of technology, medicine, and investing, had their genetic data publicly released on the website personalgenomes.org.

While the human genome has already been sequenced, there are several things that make this project so remarkable. The first is the ten participants are having their names attached to their genetic data, and having it posted on the World Wide Web. The second is that the "PGP 10" also answered a lengthy questionnaire about their habits, health issues, ethnic background, and other traits, which may give specific insights into the billions of letters that make up their genomes. This data was also released on the Web. Third, there is an ongoing effort to follow up with 999,990 other people who are interested in having their genome sequenced, answering the questionnaire, and sharing the results with the world, potentially with their names attached to the records.

One of the ultimate aims of the project is to create a public database that researchers and other parties can use to determine what traits, diseases or other characteristics are associated with specific genetic markers. A noble and important goal, to be sure, and one that could lead to medical inventions and treatments for a number of painful or deadly diseases.

But why does this otherwise personal data have to be released in such a grand, open fashion? I posed this question to George Church, a professor of genetics at the Harvard Medical School and MIT's Health Sciences & Technology department, who is the director of the PGP project. His answer:

"We feel that at least one project should try this model to determine empirically what the risks and benefits are in practice. One likely benefit is that a broader, more creative set of researchers will have access to the data. Right now, despite the new law (HR 2764) mandating taxpayer access to NIH funded research, most human genetics data are not accessible to researchers unless they have nearly identical credentials to the researchers who collected the data. Computer experts, social scientists, teachers, students, etc. do not have access. Even the research subjects in those studies do not have access to their own data."

I had another question for Church: Why bother attaching names to sequences? This is deeply personal information, and it's not difficult to imagine how the public release of named genetic records on a website might eventually lead to discrimination, more expensive insurance, travel restrictions, or even criminal activities. Moreover, it doesn't matter to a researcher whether he or she is looking at the sequence for subject #365AD98X or John T. Smith. Or does it?

Church stressed that the Personal Genome Project does not require people to share their names. He also noted that DNA research is not only of interest to geneticists and other medical researchers -- surname data can be also be used for forensic, genealogical, and historical research, he noted.

Beyond research, there are intriguing possibilities for this data being used in applications that have yet to be designed. How might this data be incorporated into the Semantic Web, or other advanced software applications? For instance, imagine an online video site that can adjust its output depending upon the genetic markers associated with vision. Or, an online game that responds to markers indicating manual dexterity ... or aggression?

What do you think of the approach of Personal Genome Project, and the potential of the data to be used to solve some of the world's most pressing medical problems? What kind of difficulties or problems might result from the release of records that have peoples' names attached to them? Would you participate? Why or why not? Leave your comments below.

(Image: Double helix, National Human Genome