Robin Strongin

It’s ironic to me that while Congress was busy twisting itself into a political pretzel over privacy, which ultimately—once again—caused the defeat of a much needed piece of legislation ushering in electronic medical records, 10 brave souls volunteered to let it all hang out at Harvard, and on the Internet.

I’m talking, of course, about the groundbreaking new venture known as the Personal Genome Project, led by Harvard genetics professor Dr. George Church. The project, which launched this week with 10 volunteers calling themselves the PGP-10 (including technology VC extraordinaire, Esther Dyson), is looking to speed medical research by doing away with traditional privacy precautions.

For the participants, the quid pro quo of having their DNA decoded involves putting their information on the project’s website—for all the world to see.

As the New York Times Amy Harmon wrote, PGP is a study…”aimed at challenging the conventional wisdom that the secrets of our genes are best kept to ourselves.”

It is a gutsy experiment. Scientists and bioethicists are right to raise questions and voice concerns. But it is not OK to stop fully consenting adults from voluntarily engaging in what I see as a truly exciting leap into the next frontier of medicine.

Research is risky – but with the right protections in place (and I believe we are on the right track with the Genetic Information Nondiscrimination Act, GINA–thank you Sharon Terry), why not?

I understand that we don’t know the full impact of all of this and that there exists the very real possibility of bad people trying to do bad things. But that’s not a good enough reason not to continue to explore the power of genetic information. We must not let fear get in the way of knowledge.

I can imagine, some time in the future, when enough people have had their DNA decoded that:

- Maybe there would be so many pre-existing conditions, that insurance of all types (health, life, disability) would have to transform its entire business model—the old assumptions and actuarial rules would no longer apply.

- Maybe there would come a day when we would understand disease so well that stigmas would become a thing of the past.

- Maybe the research could lead to cures we can only dream of today.

But we won’t know if we don’t try. Rock on PGP-10.

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One Response to “Harvard’s Personal Genome Project (PGP): Privacy Goes Public”

  1. Joe Says:

    Incredible points. Solid arguments. Keep up the great work.

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