Video Interview with Stanley Lapidus of the PGP-10

MIT Tech Review published a video interview with Stanley Lapidus, founder and chairman of Helicos Biosciences and one of the PGP-10:

Stanley Lapidus is interviewed by MIT Tech Review

December 22, 2008 | Filed Under pgp | Leave a Comment 

Interview with Robert Green about Presidential DNA

robert_green_headshot

Last week I featured a recent NEJM article by Robert Green and George Annas about presidential DNA and its role in public elections. Co-author Robert Green (pictured right) agreed to share more about his views on the issue, in the following Q&A:

TPG: Both presidential candidates released information about their personal medical history during the recent election. Why do you believe genetic information should be treated differently? Why is DNA exceptional?

RG: There is a great deal of debate about whether DNA information warrants the ‘exceptionalism’ that has attached to it. The risk information provided by most genetic tests is currently less specific than family history and other risk factors can provide, putting it squarely into the domains of disease risk that health workers regularly communicate to patients. When discussing common diseases, the “exceptionalism” of genetic testing is amplified by the incorrect public perception that most genetic markers provide highly predictive information, when in fact, this is true for only a few.
Yet for some situations, there are undeniably special features to genetic testing. DNA is a highly specific identifier for forensic purposes and the occasional revelation of non-paternity can create upheaval in families. Genetic tests for highly penetrant diseases may provide reliable predictive information far in advance of symptoms, and providing such information to one family member may inadvertantly provide it to another who does not wish to receive it. And in situations where highly penetrant disease information is available far in advance of symptoms, there is greater potential for both prevention and for discrimination or unnecessary psychological distress.
Since much of the aura of ‘exceptionalism’ surrounding genetic testing is a byproduct of misunderstood notions of determinism, some of it should fade and normalize as the population learns more about genetics in the coming decade.

TPG: Both Obama and McCain have potentially serious conditions in their family medical histories (prostate cancer and heart disease, respectively). Do you believe genetic information could have helped voters in the last election evaluate the health status of the candidates?

RG: Most of us would agree that health information is relevant to a candidate’s fitness for office, particularly an office like the Presidency. Therefore, health information that could affect fitness for office seems undeniably relevant to voter decisions. So while the public does not have a right to know every detail of a candidate’s medical history, those facts relevant to fitness should be public information. Health information related to fitness may be misunderstood, exaggerated or minimized and therein lies the problem. The public is not particularly skilled or rational at sorting out the probabilities associated with health risks from whatever source… be it prior illness, lifestyle habits like smoking, cholesterol levels, family history information or genetic testing results. In the last election, I do not believe that any genetic information currently available woudl have been sufficiently predictive to warrant sharing with voters. However, if a highly predictive genetic test for recurrence of melanoma were available, that would arguably have been relevant and thus, would warrant dislosure to voters.

TPG: In your article you argued that the fierce political environment that surrounds elections, combined with our limited ability to understand genetic information, might lead to “genetic McCarthyism”. Is this a temporary circumstance?

RG: As we pointed out, there is a clear potential that someone might try to use genetic markers to smear another candidate, particularly in the realm of behavioral of psychiatric genetics. Certain conditions, such as mental illnesses, are so psychologically loaded that such smears might even be effective, even if quickly countered by experts explaining the predictive limitations of the science. But as your question suggests, as the general population becomes more familiar with genetic information and the limitations and complexities of such information, there should be less of a potential for distortion. Whether you call it “Genetic McCarthyism” or “Genetic Swiftboating”, and whether it occurs in presidential politics or in other contentious situations (lesser elections, custody cases), all of us in genetics should be prepared for it and prepared to combat it when it occurs.

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Green, Robert C., Annas, George J. The Genetic Privacy of Presidential Candidates. N Engl J Med 2008 359: 2192-2193.

Dr. Robert Green is a professor in the Departments of Neurology, Medicine (Genetics), and Epidemiology at the Boston University Schools of Medicine and Public Health.

December 2, 2008 | Filed Under policy | Leave a Comment 

Presidential DNA: Don’t Ask, Don’t Tell?

Millions of individuals in the United States will know something about their own DNA by 2012. Whole genome sequencing will no longer be the exotic luxury item it is today. Genome scans like those available now for a few hundred dollars will be dirt cheap, if not free. By almost all accounts, genetic information will be more accessible to more people in 2012 than it is today.

The next presidential candidates will face an electorate that is radically more conversant in and curious about DNA than ever before. We should reasonably expect that the presidential election of 2012 will include, for the first time, requests for candidates to make their genetic information part of the public record.

Should the candidates heed these requests?

In an article published today in the New England Journal of Medicine, Robert Green and George Annas advocate for the next presidential candidates to honor a “Don’t Ask, Don’t Tell” policy for DNA. If genetic information is invoked by either candidate, the authors argue, the outcome will almost surely be one of exaggerated claims:

“…in the world of inflammatory accusations and smears that characterize presidential politics, it would be easy to engage in what might be called “genetic McCarthyism” by implying that an increased risk of disease is more substantial than it really is.”

The issue of presidential DNA and who gets access to it, is here to stay. 2012 presidential hopefuls have a few years to work out their talking points.

What would your talking points be? Would requests for disclosure of genetic information affect your decision to run for public office? Could you imagine scenarios where genetic information might influence your decision to vote for one candidate over another?

This week I’ll be interviewing Robert Green to learn more about his views on the future role, or absence, of genetics in political campaigns. Comments are open.

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Green, Robert C., Annas, George J. The Genetic Privacy of Presidential Candidates. N Engl J Med 2008 359: 2192-2193.

November 19, 2008 | Filed Under policy | 3 Comments 

Audio from PGP Press Conference on Public Data Release

Harvard Medical School’s Office of Public Affairs has published an audio recording of the October 20th press conference where the PGP-10 discussed their individual decisions about public release of their genomic data.

Listen to mp3 here.

October 27, 2008 | Filed Under pgp | Leave a Comment 

George Church on Ira Flatow’s Science Friday 2pm ET

George Church, founder of the Personal Genome Project, will be a guest on Science Friday with Ira Flatow, tomorrow at 2pm ET.

Details on how to tune in to this October 24th broadcast.

Update: Listen to the archived show now.

October 23, 2008 | Filed Under pgp | Leave a Comment 

Press Conference Video Footage featuring the PGP-10

After an all day meeting of talks and discussion, the PGP-10 participated in a press conference. NECN has some video footage from that event:

Scot Yount. Researchers intend to build online DNA database. NECN, October 21, 2008.

October 23, 2008 | Filed Under pgp | Leave a Comment 

Press coverage on the Personal Genome Project’s 2nd annual meeting at Harvard Medical School

The 2nd annual meeting of the Personal Genome Project was held at Harvard Medical School yesterday. Here is a round-up of articles thus far (updated 10/24/08):

“Taking a Peek at the Experts’ Genetic Secrets” by Amy Harmon, The New York Times

“Personal Genome Project Participants Get First Look at their DNA” by Carey Goldberg, Boston Globe

“Subjects’ DNA Secrets to be Revealed” by Carey Goldberg, Boston Globe

“Genome Fanatics to Post Own DNA Sequences on Web” by Denise Lavoie, Associated Press

“Harvard Genome Volunteers Say They’ll Reveal Own DNA” by John Lauerman, Bloomberg News

“Genomes on Display” by Emily Singer, Technology Review

“Thousands Volunteer to Expose DNA Secrets to the World” by Ewen Callaway, New Scientist

“Sharing Your Personal Genetic Map With the World” by Nancy Shute, U.S. News & World Report

“A New Sort of Facebook: Posting Your Genes on the Web” by Sarah Rubenstein, Wall Street Journal blog entry

“Genome Database Will Link Genes, Traits in Public View” by Ellen Nakashima, Washington Post

“10 Bay Staters to Post DNA Online” by Sacha Pfeiffer, WBUR (NPR’s Boston affiliate)

“Meet my genome: 10 people release their DNA on the Web” by Susannah F. Locke, Scientific American online

“Personal genome sequences could herald a shift in research participation” by Erika Check Hayden, Nature News

“Genetic Privacy: An Outdated Concern?” by Emily Singer, Technology Review

“9 Volunteers in Harvard Study Agree to Post Their Personal Genomes Online” by David DeBolt, Chronicle of Higher Education

“For the greater good, ten pioneers will post their genomes on the Internet,” Discover magazine blog post

“Volunteers unveil DNA, medical data in push for everyday gene sequencing” by Alvin Powell, Harvard News Office

“A Molecular Full Monty” by Ellen Goodman, Boston Globe

I’ll post commentary over the next week. Articles are also slowly being posted on the PGP news page. If I’ve missed any articles, leave me a comment or drop me a line.

October 21, 2008 | Filed Under pgp | 2 Comments 

Podcast about the Personal Genome Project via Harvard Medical Labcast

The Harvard Medical Labcast published a podcast today about the Personal Genome Project (PGP). Interviews include founder and professor of genetics at HMS, George Church; Jeantine Lunshof, ethicist for the PGP; John Halamka, PGP participant and HMS CIO; and myself.

To listen, please see:
Harvard Medical Labcast, Episode 6: Your genome, your future. [mp3 or subscribe via iTunes] The PGP-related material begins around the 9:30 mark.

September 30, 2008 | Filed Under pgp | 1 Comment 

Calling all enthusiasts: Misha Angrist talks personal genomes

Misha Angrist takes stock of a number of issues related to personal genomics in an article published today. Do people want access to their genomic data? Should people have access? What should they expect to discover from a genome sequence? What has been his experience thus far?

Misha also draws attention to one under appreciated aspect of obtaining a personal DNA sequence: there’s more to genomics than personalized medicine. Genomics might also be interesting and worthwhile even without obvious direct benefits.

“If you’re interested in medicine, you should talk to your doctor,” [George Church] says. “But if you’re interested in seeing a revolution close up and participating in research, then you should [be free to] mess around.”

Sober-faced enthusiasts may be the bootstraps necessary for the field of personal genomics to achieve lift-off. According to Misha:

“This is where we are in the era of personal genomics: some modest amusement, a few interesting tidbits, a bit of useful information, but mostly the promise of much better things to come. The more people are allowed–encouraged, even–to experiment, the sooner that promise can be realized.”

If amateur enthusiasts can make contributions to nuclear fusion (see video), why not personal genomics?

Read the article.

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Misha Angrist. Personal Genomics: Access Denied? Even if we can’t interpret the data, consumers have a right to their genomes. MIT Tech Review. September/October 2008

See, Misha’s blog GenomeBoy.com

See, PGP-10 profiles

August 19, 2008 | Filed Under pgp, thought-leaders | Leave a Comment 

Esther Dyson on the Digital Health Revolution

Scribe Media’s Peter Cervieri interviews Esther Dyson, board member of 23andMe and one of the PGP-10.

Esther Dyson Video Scribe Media

In the interview, Esther gives her views on the history of commerce on the internet, problems with health care as we know it in the U.S., and the future of genetics.

August 6, 2008 | Filed Under medical-consumerism, medicine, pgp, thought-leaders, video | Leave a Comment 

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