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No Risk In Disclosing Genetic Risks

Publication Date: 
July 15, 2009
Michael Torrice

Professor Henry T. "Hank" Greely is quoted in ScienceNow on the psychological impact of genetic testing:

Sitting in your doctor's office, you get the bad news: Thanks to a faulty gene, you're 15 times more likely than the average person to develop Alzheimer's disease (AD). But despite the diagnosis, you're unlikely to become more anxious or depressed within the next year, according to a new study.

In this age of relatively easy genome sequencing, anyone can send their saliva to a company and learn their risk of developing a variety of genetic diseases. But is this a good thing? Researchers and bioethicists worry that bad news could traumatize patients and cause depression or other psychological harm (Science, 22 February 2008, p. 1022). Few studies, however, have investigated the psychological effects of finding out this information.

Begun in 2000, the Risk Evaluation and Education for Alzheimer's disease (REVEAL) study set out to answer the question for AD. The study's authors chose AD because there is currently no treatment, so news of being at risk for the disease could be devastating...


Not surprisingly, volunteers who received the good news tended to be more relieved throughout the year than were subjects getting bad news, the team reports tomorrow in The New England Journal of Medicine. But subjects who learned that they had an increased Alzheimer's risk were no more depressed, anxious, or distressed than subjects who were unaware of their APOE genotype, the researchers found. And 1 year after receiving the bad news, the e4-positive group was no more depressed than when they started the study.


Experts say the study provides much-needed data about the psychological impact of genetic testing. But they have reservations about generalizing the results. Henry Greely, a bioethicist at Stanford Law School in Palo Alto, California, worries that patients will not receive the same level of counseling as the study's participants did from a busy doctor or through a genetic-testing company's online report....