George M. Church, a Harvard Medical school genetics professor and a group of scientists will be the first to post their most private personal information – their medical records and DNA sequence of some of their own genes on the Internet – all for the sake of research.
“Much like the way you have an amateur astronomer who tracks celestial events, we hope to inspire a generation of “amateur geneticists” to mine DNA sequences,” Church says.
The project is as much a social experiment as a scientific one. “We don’t yet know the consequences of having one’s genome out for the whole world to see,” said Church. “But it’s definitely worth exploring.”
The Personal Genome Project aims to recruit 100,000 volunteers who are willing to tell all for the sake of science. 10 scientists, known as “PGP-10” who presumably know enough to understand the potential risk of doing so, have signed up to be the first guinea pigs.
The concept is, that linking genetic data and extensive personal information – traits such as ethnic background, height, weight or a fondness for burgers – will make it easier to advance research on the genetic basis of diseases such as heart disease and cancer, which has so far baffled discovery.
The Genetic Information Nondiscrimination Act was signed into law in May due to concerns about genetic privacy and prohibits insurers and/or employers from discriminating against people based on their genetic information.
But any one of the PGP 10 could be denied long-term care insurance, life insurance or disability insurance, with no legal penalty.
Want to take a peek at your own DNA? There are several companies available to help you try. Below are a few:
deCODEme.com – Genetic scan with ancestry, health risk and sharing. Cost: $985.
GeneTree.com – ancestry testing that links genealogical records combined with social networking website. Costs: $149 to $199.
Knome.com – whole genome sequencing. 3 billion base pairs and 25,000 genes. Cost: $350,000.
PersonalGenomes.org – aims to recruit 100,000 people who are willing to share their genome sequence and medical history with the research community and general public. Costs are expected to run from $1,000 to $2,000. #