George Church, a geneticist at Harvard Medical School in Boston, was one of the pioneers in the Human Genome Project. Now he’s hatching a new genomic enterprise — the Personal Genome Project (PGP). Church and collaborators plan to build a database that will integrate individual genomes, medical histories and other information about each participant, enabling scientists to do more comprehensive genetic research — and help advance the field of personalized medicine.
While true personalized medicine is still in the future — scientists need to develop cheaper, faster sequencing technologies before individual genome sequences even become widely available — Church hopes the project will help prepare for that future. And by using real medical and genomic data from specific people, the project could also create test cases for the legal and ethical issues surrounding the availability of personal and genomic records. This would give ethicists, legislators, and scientists concrete examples to study.
The project is going to start with 1 person — Mr. Church. He is, of course, a geneticist, and “could stop the project if I saw a problem”.
We will expand to two more people in March; and once we’ve worked out a mechanism to show that the benefits outweigh risks for the first three people, we can recruit more people. We have 140 people who would like to participate. The total number of participants [at this phase] will be limited by funds and by the review board’s assessment of how it went. We are trying to get funds for a large number of people.
The initial participants will probably be tenured human geneticists, because they know the risks and other issues. Eventually, we want a broad, diverse set of people from different social and economic groups, and both healthy and unhealthy people. But they will need to be specifically up to speed on how genetics works.
His goals are open-ended. If you read through the details, you’ll see a comprehensive understanding of the perils of government, insurance companies, employers violating anonymity. Interesting project.
There’s already a company in MA that runs a medical database. This information (and I speak here as a HIPAA expert) is totally unregulated, and unlike your credit reports, you can’t do squat to correct these records. I had a blood test done 2 years ago, and it came back with some anomoly, so the insurance company wouldn’t issue me an insurance policy. Now when I apply for life insurance, I am turned down as the insurance companies use that company’s database to check your health background. Despite all of this I am quite healthy but I can’t get life insurance.