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Individuals' genomes and medical histories to be available publically

3 November 2008
Appeared in BioNews 482

The Personal Genome Project (PGP) has released its first set of results. The study, based at Harvard Medical School and headed by Professor George Church, aims sequence the genomes of 100,000 volunteers and make the majority of the information availably publically. At a press conference held on 20 October, it was announced that the preliminary results from the first ten volunteers are available, and that all have consented to their genetic and medical information being posted on a public website in due course. The ten volunteers, known as the 'PGP-10', are all prominent academics and entrepreneurs and were all present at the press conference to discuss the project and its implications for genomics research.

Genetic information about individuals has been made public before but never alongside health, physical and other personal information. The information posted will include allergies, immunisations, medical history, medications, physical traits and measurements, diet, ancestry, lifestyle, and environmental exposures. Having all this information together will mean that researchers can search for links between genes and various traits. The goal of the project is to speed medical research by removing the restrictions associated with privacy protections which usually apply in research of this kind. The idea is that the more genetic information that can be made open and publicly available, the faster research will progress.

But this is all some way off. The preliminary results do not reveal anything momentous but the hope is that further analysis will, and that this initial round of publicity will help in the recruitment of 95,000 more volunteers (to date the project has 5000 lined up to take part), and also open debate about the ramifications of having one's genetic information in the public eye.

The PGP-10 includes Harvard psychology professor Steven Pinker who joked that his genes suggested he was at heightened risk for irregular menstrual periods but said 'I'm not worried about that', and said of his genetic propensity to be born prematurely, 'a little late for that, also'. Other volunteers include Esther Dyson, a trainee astronaut and Misha Angrist, an assistant professor at Duke University, as well as Professor Church himself.

Genetic Privacy: An Outdated Concern?
Technology Review |  21 October 2008
Give me my genome
Nature |  21 October 2008
Harvard University gene project to reveal DNA secrets of 10 top scientists
The Daily Telegraph |  20 October 2008
Meet my genome: 10 people release their DNA on the Web
Scientific American |  21 October 2008
Personal genome project participants get first look at their DNA
The Boston Globe |  20 October 2008
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