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.

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

db

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.

Jason

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 pged.org. 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?

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