I've always thought it would be crushing to know that I carry a gene for some dread disease yet could do nothing to prevent it. Yet here comes a report from the New England Journal of Medicine in which researchers found that people who learned they were carrying a gene for Alzheimer's disease were no more distressed than those without the gene. Robert Green, MD, MPH, the lead author at Boston University, was quoted in the New York Times today as saying:
There has been this extraordinary worry that disclosing risk was going to devastate people. This has upended those assumptions.
The study, which could very well change genetic testing practices, involved 162 adults who had a close relative with Alzheimer's. All were tested for a gene, called APOE (apolipoprotein E) which increases risk for the disease. Of these, 111 opted to learn the results. Six weeks later, they filled out a survey for anxiety, depression and distress related to the test. The results did not differ between those who tested positive for the gene and those who got a negative result. This was a surprise. I can't help but wonder how, over time, carriers of the gene will wrestle with this new knowledge.