Testing the boundaries of medical privacy

BOSTON — If you haven’t heard of the PGP-10 yet, you will. No, they are not defendants in some crime of the century. Nor are they a new techno group. If anything, the PGP-10 resemble a chorus line performing what one geneticist calls a Molecular Full Monty.

This cohort of entrepreneurs and scientists is the cutting edge of the Personal Genome Project begun by Harvard Medical School. On Tuesday, in an act of altruism and/or exhibitionism, the PGP-10 put their medical records, traits and genetic codes on the Web where all the scientists, paparazzi and Peeping Toms can see them.

The aim is to create a huge public database of information to speed research into the causes and cures for genetic maladies. The leader is geneticist George Church, otherwise known as No. 1 in the PGP-10 list, where you can find out that he has narcolepsy and motion sickness. As you can see, Church believes that privacy is a rather old-fashioned concept. He hopes to eventually get 100,000 people willing to have their DNA snips publicly searched.

The 10 volunteers are part of a long history of scientists who experiment on themselves. Only this is not just a scientific experiment, it’s a social experiment. The PGP-10 aren’t in danger of untested vaccines or radium. They may, however, be in danger of social stigma.

It’s one thing to be part of a vast research project for the common good. But what are the costs of having your genome, let alone your medical records, an open book? Or, rather, an open Web site?

So far, there have been no shocking discoveries in the first 20 percent of the DNA sequences released, although psychologist Steven Pinker (aka No. 8, with a normal prostate and flat feet) did discover a genetic predisposition for … irregular periods. And this high-profile group is pretty insulated from the dangers that aren’t covered in the new federal law forbidding genetic discrimination in employment or health insurance.

But DNA is also a family matter. Sharing your genes is sharing information about your sister, mother, children and unborn grandchildren. We have yet to learn what it will be like to know — and have it known — that we carry a genetic marker for a disease or mental illness.

If you have the genetic predisposition for diabetes, will someone tell you to drop that candy bar? Does losing your glasses take on another meaning if it’s known that you have the Alzheimer’s gene? There’s enough concern for even Pinker to “reserve the right of a line-item veto” for that part of his code.

As life science entrepreneur Stanley Lapidus (aka No. 6 and genetically susceptible to tuberculosis) says, “We are part of a group that will help define what is medical privacy. I’m making a statement. I may regret it.” But there are already 5,000 volunteers lined up behind him in the queue. And above all else, they may be proving how attitudes toward privacy itself have already changed.

We now live in a Facebook era. Astonishing numbers of Americans put their lives on the Web. We live with blogs, and video cameras at every ATM and political rally. Off the record ends up on YouTube. What was once private, like depression or sexual dysfunction, is now cocktail chatter. Openness, social networking, crowdsourcing are the new norms. People put their own medical issues on Web sites like patientslikeme.com in return for shared information.

Meanwhile, more people are getting their DNA “done.” As the price goes down, it may become routine. If we require presidential candidates to release their health records and financial records, why not their DNA? And what happens if, as one geneticist fantasizes, we discover a Machiavelli gene? Machiavelli for president?

I confess that I am not interested in sharing my weight, let alone my genes, on the Internet. Openness may be great for science but I prefer to choose my confidantes. I’m not convinced that the values of personalized medicine outweigh the values of personal control. And as long as people are still uncertain about the difference between a genetic predisposition and a prediction, I’ll take a pass on publicizing my family’s DNA.

But I remain a groupie of the PGP-10, and the PGP-5,000, as they become celebrities in the world of DNA snip-searching. They may not only be unlocking the secrets of DNA and its relationship to disease. The PGP-10 pinups may provide a blueprint to the dangers of unlocking secrecy itself.

Ellen Goodman is a Boston Globe columnist. Her e-mail address is ellengoodman@globe.com.

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