Genetic Privacy: An Outdated Concern?
A new flood of personal genomic and medical information will soon be publicly available online.
George Church, a participant and leader of the
Personal Genome Project at Harvard Medical School, undergoes a skin biopsy.
Scientists will develop cell lines from Church’s skin cells, which will be
distributed to scientists around the world for research.
Credit: Personal Genome Project.
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The vote was unanimous. Every one
of the PGP-10–the first 10 volunteers for the Personal Genome
Project–decided to make the genomic information he or she has received so
far public, along with his or her medical and other trait information. (For
background on the project, check out yesterday’s “Genomes on Display.”)
The group revealed its decisions at a press conference at Harvard Medical
School on Monday afternoon.
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None of the information that the participants
have learned is likely to be life shattering. Harvard psychologist Steven
Pinker, for example, learned that, according to the study’s results, he has
some susceptibility to irregular menstrual periods and to being born
prematurely. “I’m not too concerned about that,” he said at the press
conference. Clearly, neither of these variations is
important for Pinker’s health, although theoretically, this
information might be of interest to future Pinker generations who inherit them.
John Halamka, CIO for Harvard
Medical School, carries a mutation for hereditary motor and sensory neuropathy with optic atrophy,
a childhood neurological disease. But since Halamka survived childhood
unscathed, and only three other people in the world have been shown to carry
that particular mutation, it’s hard to know what impact, if any, it has had on
his health. (George
Church, who heads the project, also noted that given the preliminary nature
of the data released on Monday, the finding might be an error.)
Before the PGP-10 revealed its decisions
to the world, the group spent the day discussing some of the issues that the
unique project raises–especially the issue of privacy. The plan for the PGP is
to make all aspects as open as possible, from the technology that is developed
to the medical and genetic information of the participants. The rationale is
that it is difficult to promise research subjects anonymity when the data being
collected includes genetic information–the ultimate personal identifier–so it’s
better to make everything open from the get-go.
“We are at the beginning of a
revolution in health care: huge numbers of us will have our genomes sequenced
for medical, forensic, or military purposes, and the notion that information
can be kept private is nuts,” said Stan Lapidus, CEO of Helicos Biosciences.
“Part of the PGP is to understand how our lives are affected. I have a hunch it
will be not a lot.”
Entrepreneur Ester Dyson said that
she wanted to bring genomic information into the realm of the mundane. “I want
to show people this information is not inherently dangerous,” she said. “Information
when misused is always dangerous, but it’s more dangerous when people attribute
something mystical to it.”
Still, if they change their minds,
the participants will be able to block or redact any information–as much as
that can be done. Pinker, for example, said that he isn’t sure if he wants to
know whether he carries a genetic variant that dramatically increases his risk
of Alzheimer’s disease. But because of the way that DNA is inherited, it’s
possible to determine whether someone likely carries the variation by the code
of neighboring DNA. In addition, Church and his collaborators are creating and
distributing cell lines made from participants’ skin cells, which means that their
DNA could be sequenced by anyone studying the cell lines.