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Esther Dyson and the “First 10″

Esther Dyson is a prominent force in the digital world, and is considered to be a member of the ‘digerati’ (a term for people who are the movers and shakers of everything technological). She is the daughter of the famous physicist Freeman Dyson and the mathematician Verana Huber-Dyson.

According to Wikipedia, the company that Ms. Dyson founded, EDventure Holdings, analyzes the impact of emerging technologies and markets on economies and societies. In addition, Ms. Dyson is on the board of the genetics company 23andme. Her interest in genetics and emerging technology is undoubtedly one of the main reasons she has decided to become one of the “First 10.”

The “First 10”

The “First 10” (or “First Ten”) references ten volunteers who are part of the Personal Genome Project, or the PGP. The PGP, headed by Dr. George M. Church of Harvard, aims to develop affordable personal genome sequences as well as user-friendly data applications. Initially, the project will start by releasing the sequencing and complete medical records of 10 individuals. Because of issues of risk versus benefit and informed consent, the first set of ten volunteers will be people who have a “master’s level or equivalent training in genetics or equivalent understanding of genetics research.” According to the PGP website, “[p]roduction costs per subject range from $8K for a limited subset of the genome to over $200K per subject to cover a significant fraction of their DNA.” According to a recent New York Times article, the “project’s volunteers will receive the one percent of their genome currently deemed most useful at a cost of $1,000.” This conflicts with the PGP’s description of the cost, and I’m not sure what the discrepancy is about.

Ms. Dyson’s Decision to Become One of the “First 10”

Ms. Dyson recently gave a short talk (the video is available here) at Fortune’s iMeme conference in San Francisco about her part in the Personal Genome Project. A summer of the talk was posted at Xconomy.com, “Learning from Esther Dyson’s Genome”:

“Famous venture capitalist Esther Dyson explained her reasons for being one of Church’s first ten volunteers last week at Fortune’s first iMeme conference in San Francisco. Church (who is also an Xconomist) hopes to gather enough data from the project to speed research into the links between gene variations and both common and rare human diseases, and to accelerate progress toward more individualized health care based on patients’ genetic profiles.”

In the comment section of the Xconomy.com post, you’ll find a thought-provoking conversation led by Willy Lensch, Ph.D. ThePersonalGenome.com pointed out that the Dr. Lensch’s first comment ended with a great sentence, so go check it out.

“Full Disclosure”

This week also saw an entire article in the Wall Street Journal titled “Full Disclosure” by Ms. Dyson. In the article, Ms. Dyson points out that sometime this summer or early fall, her genome, her answers to a substantial health questionnaire, and all her medical records will be posted on the Internet for the entire world to see:

“I’m one of 10 members of Harvard geneticist George Church’s Personal Genome project. We all come to this with slightly different motivations, histories and medical records. But we share, in theory, the equivalent of a master’s degree in genetics, an age between 30 and 100, and a willingness to come to Boston to give blood, get our faces professionally photographed and sit down with one another to discuss strategy.”

Ms. Dyson goes on to explain her motives for becoming one of the “First 10”:

  1. She wants to show that there’s nothing especially magical about her genome – she’s actually more worried about releasing the questionnaire, which documents her behavior!
  2. She doesn’t have any deep secrets or vulnerabilities;
  3. She won’t get fired and she has insurance (i.e. low potential for discrimination);
  4. She wants to examine the effects of personal genome sequencing on society;
  5. She believes such sequencing is inevitable, and;
  6. The project will generate useful data for others to use.

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.

Blaine Bettinger

Intellectual property attorney, genealogist, and author of The Genetic Genealogist since 2007

4 Comments

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  2. As I said on the Genome Technology comments (where I am listed as phylogenomics and can’t seem to be them to put my actual name there) — I think there is one issue that is being ignored here. When researchers analyze the data they will potentially be biased by knowing who the data comes from. For example, if I was analyzing Dyson’s DNA and I found something indicating antisocial behavior (assuming of course that there were such a thing in the first place) I might question the results (because, well, I like Dyson). If on the other hand I found some DNA haplotype associated with antisociality in Dick Cheney’s DNA, well then I might just be inclined to accept it as fact. I think it is fine for Dyson to release their genomic data. I think it is unnecessarily inviting bias in analyses to have her’s and other names specificially associated with the DNA in the databases.

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