A friend asked me about my decision to enroll in the PGP and the effect it might have on my two kids. By releasing my genome, he wanted to know, am I potentially limiting my children’s claim to privacy?
The short answer is yes. “Personal” implies it’s only about you, the sequencee. But you don’t have to be Gregor Freaking Mendel to know that it ain’t just about you. In the near term, familial disclosure may be the biggest elephant in the room for personal genomics.
If you want an idea of how this will play out again and again, read the front-page article in last Sunday’s NY Times about the 33-year-old medical resident, Deborah Lindner, her positive test for a mutation in the breast cancer gene BRCA1, her reaction, and the effect it had on her family.
Within the Lindner family, you see two types of folks, which Jason Bobe presciently summarized: the infovores and the ignotarians. The former see knowledge as power. The fact that their relative was found to carry a mutation was a call to action. They got tested for the mutation and, if they were positive too, they either continued to monitor themselves closely through mammography or else elected to have prophylactic surgery.
The others, the ignotarians, did not get tested and in some cases derided Deborah’s decision to have a mastectomy–”Why is she mutilating her body?” they wondered. I suspect their objections were as much about being forced to confront and perhaps lose their ignotarian status as it was about anything else.
Despite my participation in the PGP, I am very sympathetic to the ignotarian position. Just because I have a toothache doesn’t mean I want to rush off to the dentist. My first course of action will be to ignore it and hope it goes away. I reckon that most of us have aspects of our lives in which we choose to be ignotarians.
I pray that nothing in my genome will cause my daughters anxiety. I can’t change their genomes, but as they get older I can counsel them about the evils of genetic determinism, I can tell them that what’s known about my genome is only probabilistic as far as they’re concerned. In other words, I can try to help them interpret what the information in my genome and/or theirs might mean. The option of choosing to remain a card-carrying ignotarian, however, will only get harder as time passes, and for them it may well be impossible.
I’m guessing that in the end it won’t matter–they will probably both have blogs and Facebook profiles and all the rest by the time they’re adolescents, just as they can’t get enough of that goddamn Webkinz right now. And I imagine by that time, posting one’s genome online will be no more taboo than posting one’s CV, or at worst, one’s slightly drunken Flickr photos.
But I could be wrong.