Filling in the Blanks
Earlier this month, attendees at the 2008 American Health Information Management Association Convention and Exhibit got a glimpse of what may be to come in the future of health care—namely, personalized genomic medicine, or customized care based on that those three letters you learned in 7th grade: DNA. If we could hop in a time-traveling coupe with Marty McFly and head to 2020, we just might find doctors assessing disease risk and prescribing treatments based on the genetic profiles of patients and their immediate relatives.
While medicine is admittedly just on the cusp of the “genomic era,” medical records are already getting snagged in the line—or in this case, double helix. In British Columbia, a chief justice has issued an injunction ordering all fertility doctors to retain the medical records of sperm donors. The injunction stems from a class-action lawsuit led by a woman who was fathered by a sperm donor and is searching for her medical identity. According to the Vancouver Sun, the woman’s attorneys argue that destroying donor records robs children of “genetic and medical information that could prove crucial to their health.”
Sure, it’s a pain to keep track of your family’s medical history—Did Uncle Bob have a stroke or a heart attack? Did we really give Dad high blood pressure, or did he just say that when we fought?—but it’s downright frightening to be clueless about cancer, diabetes and other disease risks. As the convention speakers agreed, a plain-old paper-based family health tree (heck, doodle a few leaves while you’re at it) can be a valuable resource for monitoring risk and preventing disease. For children of sperm donors, however, half the branches are bare. Donor records would at least fill a few gaps in the health divide.
At the same time, should fertility clinics retain all records just in case someone, some day comes knocking at the door with a release of information request? Realistically, retaining so many records is unfeasible, so what should the protocol be?