As the Human Genome Project and subsequent research generate DNA tests for predispositions to all kinds of conditions, little is known about what it is like to live with such knowledge. These stories are aimed at illuminating the dilemmas of some of the first Americans to reach this genetic frontier. Ifthere is a unifying “finding,” it is that the information is invariably double-edged. It can bring huge benefits but they come with burdens that we may not fully contemplate as we rush to embrace it.
“Facing Life With a Lethal Gene” is about a 23-year-old woman who finds through a DNA test that she will soon develop the incurable brain disorder called Huntington’s Disease. I followed her for over a year as she adjusted to the fate she had yearned to face, fighting it at first but finally learning how to live with it.
In “Cancer Free at Age 33, but Weighing a Mastectomy,” another young woman gets a grim result from a DNA test: she has up to an 80 percent chance of developing breast cancer. Unlike the woman in “Facing Life,” this one can choose to dramatically reduce her risk -but only by taking the equally dramatic step of removing her breasts even though –as family members point
out –she may never get sick. This story focuses on the strain such choices place on families who share genes but not necessarily opinions of what should be done about them.
After writing so much about other people’s testing experiences, I agreed to be tested myself as one of the first users of a service offered by the start-up company 23&Me, which promises to tell customers whatever science currently knows about their genetic profile for $1000. “My Genome, Myself,” took a lighter tone, as I discovered the allure of peering into one’s genetic self, even when the picture is blurry and incomplete. I spent hours every day surfing my own genome, learning fun and sometimes sobering facts about myself.