The Beginning of Personal Genome Project: Positive and Negative Aspects

By Alice Carver
14:30, October 21st 2008
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The Beginning of Personal Genome Project: Positive and Negative Aspects

Harvard Medical School genetics professor George Church, Harvard psychology professor Steven Pinker and Dr. John Halamka, chief information officer at Harvard Medical School, and technology investor Esther Dysin are among the first 10 participants, volunteers in the genome project, who agreed to make their genetic data and phenotypes available to the general public. Their genomes will be available on the website www.personalgenomes.org. They decided to make their personal genome information available to help medical research.

The Harvard team, led by Harvard Medical School genetics professor George Church said this is the first step of a major initiative to make personal genome more accessible and to create a resource for researchers investigating the genetic basis of diseases and other traits.

The genetic information will include disease history, medications, allergies, ethnic backgrounds and also photographs and data on other aspects from food preferences to television viewing habits.

Nine volunteers said they would release their personal genetic information, that have been fully sequenced so far. They received the protein-coding regions of their genomes Monday. A tenth participant, Misha Angrist, science editor at the Duke University Institute for Genome Sciences & Policy, said he plans to make his medical records public only after he sees it.

One of the participants, John Halamaka, Harvard Medical School’s chief information officer, said he was surprised to find out that he has a gene thought to cause a rare neurological disorder that occurs in childhood and causes weakness and numbness in the legs. His results also showed that he could be at increased risk for prostate cancer. He said that there is a great advantage of knowing his sequences because this information could help him when he has a physical examination.

The genetic and medical information publicly available will make it easier to advance research in the genetic basis of diseases such as cancer and heart disease. The aim of the project is to discover how genes, personal traits and diseases are related.

The scientists will decode the DNA of those who decide to participate for free as long as they agree to make their genetic data and phenotypes available to the general public.

“We don’t yet know the consequences of having one’s genome out in the open,” said George M. Church, the project’s leader and one of its subjects. “But it’s worth exploring.” To prevent any negative outcomes, organizers are committed to providing volunteers with the best information available so that they can make informed decisions about sharing their DNA sequence and personal information with the research community and the general public.

Earlier this year, Church’s project won approval from Harvard’s ethical review board to sequence and post the genes and records of 100,000 participants.

Genetic oversharing, however, may have some risks that cannot be fully understood at this point, Church said. As an example, participants might suffer discrimination if their personal genetic data shows that they are at risk of getting a serious disease. These concerns over the disclosure of genetic information led to passage in May of the Genetic Information Nondiscrimination Act. The new U.S. law prohibits insurers or employers from discriminating against people based on their genetic information.



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