Too Much Information


Too Much Information

Field Notes from the Genetics Frontier

By Susan McDaniel

May/June 2007


On a warm spring day in 1996, I heard a knock on my office door in the Department of Psychiatry at the University of Rochester Medical Center, where I'd worked for more than a decade helping patients deal with the emotional impact of long-term medical conditions, such as infertility, cancer, seizure disorders, and chronic illness. I opened the door and there stood an older man in a long white coat, his rust-colored hair rumpled, looking exactly the part of a brilliant but slightly distracted physician-scientist. He said his name was Peter Rowley. He was a highly respected medical geneticist, who'd recently completed one of the early studies testing high-risk women for the rare but potent BRCA1 and BRCA2 genetic mutations. n Many of the women he'd studied had tested positive for the mutation, which meant that not only were they highly likely to develop breast cancer if they hadn't already, but their sisters and children might develop it, too. Now, a year after his study had been completed, these women were still calling him, still distressed about the positive result, still anguishing about how they should deal with the burden of this new knowledge.

Many of them had requested and received preventive mastectomies. But the medical fix hadn't begun to "fix" the emotional and relational problems the test had raised for them. They wanted Dr. Rowley to help them with the existential dilemma they found themselves in, after the testing. What did this knowledge mean for them…

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