Esther Dyson, Genome Enthusiast

Esther Dyson, Genome Enthusiast

by Dr. Hsien-Hsien Lei
Posted July 25, 2007 in DNA in General, Personalities with DNA, Polls About DNA

cheerleader 2Add Esther Dyson to the list of genome enthusiasts, which includes her father Freeman Dyson, James Watson, Craig Venter, and me! (OK, so I am not of the same league as the others on the list but a girl can dream, can’t she?)

In today’s Wall Street Journal, Ms. Dyson writes about her decision to reveal all–her genome, her health, and her medical records–as part of George Church’s Personal Genome Project (PGP). She gives the following reasons for her “full disclosure”:

  1. She wants to show that her genome doesn’t hold any special information that others can use to hurt her.
  2. She doesn’t believe she has any deep secrets to hide or anything that would be detrimental to relatives who share parts of her DNA.
  3. She doesn’t work for anyone who would fire her for having genetic mutations.
  4. She has health insurance.
  5. She wants society to start thinking about what will happen when we know more about our genetic predisposition for certain medical conditions – taxes, subsidies, penalties,….
  6. She believes that information on our personal DNA will become an inevitable part of our lives. We must begin to address the possibilities now and take responsibility for the consequences.

Esther Dyson’s genome and other personal health info will be released to the public in a couple of months along with nine other people’s (does anyone know who they are?). As Ms. Dyson mentions in her piece, genes are not destiny. Because environment plays a strong, if not stronger, part in who and what we are, how much of that information was collected from the PGP participants? I wonder what factors–genetic or otherwise–might have contributed to the development of someone like Esther Dyson, a successful free-thinking, cutting-edge entrepreneur.

Enrollment in the Personal Genome Project will open again in September. If I had my genome sequenced, I’d like to compare it to Ms. Dyson’s and see what doesn’t match up. Which parts of my DNA kept me from achieving the same heights of success? ;)

Would you apply to have your genome sequenced by the PGP? Take the poll below:


NB: More discussion on the Personal Genome Project at Genome Technology Daily Scan.

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Comment by Blaine Subscribed to comments via email

I definitely would (and will) apply. Although these earliest volunteers are risking more because of the ‘full disclosure’ of their information (both medical history and sequencing), I think the benefits to science outweigh the risks. They’re risking more because they are the “First 10″, with 100% disclosure, including their identities – in the future, with projects sequencing 100’s or 1000’s of volunteers, identities won’t be as important. But, by being one of the “First 10″, they are opening the public’s eyes to the Project and to the importance of personal genomes.

Some people argue that requiring highly educated or famous individuals for the “First 10″ was elitist. But if Joe Schmoe gets his genome sequenced, who cares? The media won’t care, and the public won’t care. After all, what does Joe Schmoe have to lose? These “First 10″, however, are in the public eye and thus their information (for better or worse) is more valuable in terms of public exposure. There will come a day, very very shortly, when Joe Schmoe’s genome is essential to the project.

Comment by Hsien

Great points, Blaine. I’m really curious to know who the other 9 people are esp. if together they’re supposed to have the equivalent knowledge of a Master’s degree in genetics.

As for including only the famous and elite, at the risk of sounding like a snob, nowadays the public only really pays attention to celebrity wrecks. Britney Spears and Lindsay Lohan, anyone? I’d be willing to bet Lindsay at least has a genetic susceptibility to alcohol and drug abuse.

Comment by David Bradley

I don’t know whether it’s paranoia…but PGP in my mind stands for Pretty Good Privacy (as in the encryption technology)


Comment by Hsien

Oh, I didn’t know that! Wikipedia also says that PGP stands for “Pearl of Great Price, one of the four books of scripture in Mormonism, whose title is an allusion to the Biblical parable.”

Comment by Jason Bobe Subscribed to comments via email

Hey guys -

I’m so happy you brought up the “elitism” argument that was proffered in the Erika Check article a month back. I’ve been meaning to write about that for a while now. I was totally flustered by that article! Maybe it was written to be headline grabber, but sheesh.

I couldn’t believe that they were able to collect the 3 quotes that they did. Honestly, I’m still holding out for the possibility that they were all misquoted or taken out of context.

Identities TBA soon.


Comment by Hsien

I remember when p-ter at Gene Expression wrote about that. Maybe it’s time to go a-begging for that article. Please? ;)

Comment by Hsien

Thanks for the Nature article, Blaine!

(Comments wont nest below this level)
Comment by Dana Waring Subscribed to comments via email

I am interested in the results of the quiz! My project, which is teaching people about the social and ethical issues about personal sequencing, we cooked up a list of questions that a person might ask themselves if they are thinking about signing up for something like the PGP. Here are a few. More at What else should we include?

How will my relatives feel about the information learned, as it will also impact them?
Should I share information with my health, life, and long-term disability insurers?
What, if any, sort of proactive decisions regarding lifestyle or medical choices should I make? Can I afford the treatments I might want or need?
Who owns my DNA, and the information contained within it?
Could this change how I think about myself, culturally, physically, emotionally?

Comment by Hsien

Those are great questions, Dana. I think a lot depends on the degree of privacy. In the case of the first PGP participants, they’ve chosen not to t have any privacy at all but for the rest of us, we should be able to choose how much we want to share and limit whatever negative consequences we may anticipate.

Will be checking out your site ASAP! Congrats on getting it launched.


[...] There is a great discussion of the project and Ms. Dyson’s decision to join it in the comment section of a post at Genome Technology. You can also find more at EyeonDNA. [...]


[...] Hsien-Hsien Lei ran a poll on her blog concerning whether or not you would like to have your whole genome sequenced. She also wrote about the Personal Genome Project – which sounds pretty cool, except there is no way I would have my medical records made public – my DNA – yes!, but not the medical records. [...]


[...] out of the Wu Lab at Harvard Medical School, Dana Waring is in charge of the Personal Genetics Education Project. This website will be particularly useful [...]


[...] this might appease genetic privacy advocates at this point in time, they should think ahead. Once whole genome sequencing is readily available to each individual, destroying blood samples will be too late since DNA analysis can be performed quickly, if not [...]


[...] Esther Dyson, Genome Enthusiast – Hsien gives us the goods on one woman’s decision for full disclosure on her genome, her health, and her medical records–as part of George Church’s Personal Genome Project (PGP). At Eye on DNA. [...]


[...] to pledge my life to personalized genetics. Recently, Esther Dyson, a famous venture capitalist, wrote about her decision to reveal all of her genetic data. What are the reasons? Erika Jonietz tells [...]


[...] want it done too. What are the chances that my neighbor who doesn’t have a clue who Esther Dyson is would want to follow in her footsteps? They’d be more likely to be influenced my incessant [...]


[...] they’ve apparently moved into new headquarters. Here’s a shot labeled 23andBikes from Esther Dyson’s Flickr [...]


[...] karyotype last week and now you get to see a picture of Ryan herself from 2005 again from Esther Dyson’s Flickr [...]


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