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TR: Are you recruiting participants for the pilot project? Who will be the pioneers?

GC: It took a year for us to get permission for the project from our institutional review board. The recruiting process will go in stages. The board asked that I start with myself because I am well-informed and could stop the project if I saw a problem. We will expand to two more people in March; and once we’ve worked out a mechanism to show that the benefits outweigh risks for the first three people, we can recruit more people. We have 140 people who would like to participate. The total number of participants [at this phase] will be limited by funds and by the review board’s assessment of how it went. We are trying to get funds for a large number of people.

The initial participants will probably be tenured human geneticists, because they know the risks and other issues. Eventually, we want a broad, diverse set of people from different social and economic groups, and both healthy and unhealthy people. But they will need to be specifically up to speed on how genetics works. This could be something very big once people tune into it. Not many know people know about it so far.

TR: How many people do you want to include in the project in the long run?

GC: If we’re talking about a broad consortium of researchers and volunteers, there is no upper limit. If you could educate a billion people to the point where they could give informed consent, the statistics would be better. But it would be a huge educational task to get to that point. There’s a need for broader education in genetics. It’s almost up there with the three Rs in terms of its fundamental impact for the future. People are sophisticated in personal electronics. Hopefully, there will be a similar motivation for understanding yourself as well as you understand your car.

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Tagged: Biomedicine

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