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.