Friday, October 24, 2008

PGP-10:Gene Exposure?

I just read in the Boston Globe in Ellen Goodman's op-ed column that a group of scientists and entrepreneurs have joined in the Personal Genome Project (PGP). That sounds harmless enough, but this involves putting their personal genetic codes out there on the worldwide web for all to see. What price knowing and who should know?
There seems to be something twisted here. Last time I looked every time I went to any kind of medical appointmant I had to sign a form saying I'd read about and understood the privacy regulations. Medical personnel couldn't reveal anything without my permission, even if I were dead! Of course people have found ways and words around such rigidity. BUT now. . . not only what you have but what you may contract can be out there.
The PGP is the brainchild of geneticist George Church. (Love his name, being myself in favor of universal grace without condition for all.) Church thinks that privacy is an old-fashioned concept and hopes to create a public database of information. The larger goal is noble: speed up research as to causes and cures for genetic illnesses. But is this thought through? I can imagine worldwide panic and paranoia to say nothing of lawsuits looking something like defamation of genetic character or broken engagements, as in, I think I won't marry a potential depressive.
Goodman points out that it wouldn't be hard to lose sight of the distinction between a predisposition according to a genetic read and a prediction. And what is the distinction between a secret and a confidence? Keeping a big secret takes a lot of emotional energy. It can lead to lies. It takes energy away from living your life. Being sensitively confidential, however, is a practice that builds trust and makes for good human relations.
Thinking of things spiritual, I notice that many people are very private about their religious faith. Too private? Is it a secret? Or is it something to share with delight just as you would a great book you'd read or a new recipe or something that enriches your life? In our parish community we pray with and for each other. It's humbling just to know that people are praying for you in specific ways; that is, for your cancer to heal, for your wounded child to recover, for your beloved dog to survive dangerous porcupine quill removal surgery. Then they ask you how it's going; they care; they rejoice with those who rejoice and weep with those who weep.
Perhaps Godde knows all about it from on high as some folks say, but I think it's not about knowing but about connecting. I may know, for instance, that you are hurting but until you open up to me I can't connect with you.
Still, there's no one "rule" for everyone in the game of disclosure. It's a matter of personal choice. I guess I'd have a gene portrait done if I were younger and if the information could foster prevention, maybe save or lengthen the quality of my life and the lives of others. But I would want it to be between me, my physicians, family, friends, and my praying community—not the "world," yet.
For now I cast my vote with pro-choice modesty.