Decoding Culture: The Personal Genome Project And What It Says About Us

If you could make your DNA available to the world, would you? Would you want to know what is inside of yo or would you be concerned about what might happen?

Such questions are no longer hypothetical. A recent article [1] in The New York Times describes a new initiative known as the Personal Genome Project . The idea is simple: You send in your DNA, which is then decoded into your genome and placed on the web site. But that's not all. Your phenotype, or the resulting products from your gene sequence, is also made available. That means information about your allergies, medications you take, disease histories, photos of you and other obscure facts such as your food preferences are also placed on the web site.

The upshot is that anyone can then go to the website and do research on your DNA without needing to obtain clearance. This means that many different research groups around the world can do research on your genes and discover information that you may never have known about yourself, such as medical conditions you might have. In doing so, they'll learn more about the human genome to add to the scientific knowledge base. The downside is, of course, anyone can know your name, face, medical history, tastes and a myriad of other personal information.

Much has been said about the good and the bad of such things. What I would like to do instead is to discuss how this is the outgrowth of a new cultural trend: making personal information publicly accessible without fear of consequences.

Think back to the 1970s when the television show Candid Camera was airing. Yes, Fannie Flagg, writer and co-host of the show, told NPR in a radio interview for Wait Wait! Don't Tell Me that people were almost always delighted to find out they had been pranked and would appear on television. (She could only recall one incident where someone was apalled, and that was because he had been caught with a woman other than his wife). But there was a key difference: Individuals who appeared on the show weren't identified by name. You would only be recognized by people who knew you. And even if you were recognized by anyone else, there would be relatively little information for them to use against you.

Today, more and more people are increasingly comfortable with being identified by name and by having much more known about them publicly. Look at the 2003 film The Real Cancun, where young college students publicly revealed their bodies, sex lives and behaviors for the film cameras, along with their names and identities. Or look at Facebook, where people can associate their names with their photos, activities and opinions for all to see. Yes, there are privacy settings, but anyone intelligent knows that there are often

ways around them [2]. Other people, particularly prospective employers, just might find their way to your profile and to everything about you. With a history like that, it's not too hard to imagine why people would be comfortable with the level of transparency the Personal Genome Project requires.

These actions are our choices, and if we make them, we accept whatever consequences fall on us. But what we often forget is that our actions also affect other people. By exposing your own genetic information in the Personal Genome project, for instance, you also give potential information about all your children, siblings and other relatives. Granted, it reveals nothing definitive, but since they share your DNA, it does provide a starting point for people to guess what genes they could have.

Perhaps people will react like Dr. John Halamka's daughter. Dr. Halamka is participating in the Project, but warned his daughter that it might negatively impact her dating life. A suitor might call off a relationship if he learned of a worrisome trait in her dad's genome. Her response? "I wouldn't want them as a boyfriend anyway." Will others be as nonchalant? As with all radical scientific experiments, only time will tell.