What is the promise of personalized medicine and predictive health? Here's a rough description: physicians will know more about individual patients and will therefore be better equipped to provide care. But will it be so simple? In any field, the acquisition of more information, even accurate information, does not necessarily lead to successful application. So, let's say we all buy a test from 23andMe or deCode or Navigenics or any of the growing list of direct-to-consumer genomics company ... and we unpack every last bit and byte of our genetic data, will the world be a healthier place? Or, let's say, just a few of us fork over the $1000 to have our genomic fortunes told … are we really ready for the complications that this information may bring?
If the practice of genetic genealogy is any indication, the future of medicine in the genomic era will be suffused with complications. Nancy Berlinger, of Bioethics Forum, provides an engaging and insightful account of a few of these in "And I am Marie of Romania: Genetics, Genealogy, and the Ethics of Storytelling". Berlinger adds to the ongoing commentary on the new Henry Louis Gates, Jr. venture, AfricanDNA. Gates started this venture, in part, because of frustrations with inaccurate and misleading genetic genealogy results. As Berlinger writes, the misinterpretation (that Gates possesses a genetic link to those once living in the ancient North African kingdom of Nubia, and not, as it turns out, to a less impressive European "servant" in the American colonies) might have been the result of poor science, but also, might be attributed to "wish fulfillment on the part of geneticists and their clients".
To the Gates story, Berlinger contributes related accounts of individuals receiving, accurate, but potentially unwelcome, genealogical information. While America still struggles with its racist inheritance, individuals like Bliss Broyard struggle with new found genealogical information (see her new memoir, One Drop: My Father’s Hidden Life — A Story of Race and Family Secrets). Every one has family secrets--information we are not privy to at the moment--and (as Matt Mealiffe reminds us in Who's Your Daddy?) there's no reason to believe that all or even most of these secrets are about race. Clearly, genetic genealogy (as Blaine Bettinger often notes) is no simple task--will personalized, genetic medicine be any easier? Who will hold and who will expose the secrets in your genome? Is it possible, just maybe, that a one or two of the most enthusiastic, early adopters of personalized medicine will discover a few things they'll wish they'd never known? - J.O.