With more gene variants becoming linked to disease risk and genetic testing becoming more widely available, more people are grappling with whether they want to know the results of such tests, writes Gina Kolata at the New York Times.
She tells the story of Marty and Matt Reiswig, two brothers who knew that Alzheimer's disease ran in their family. After a cousin that they didn't know well wrote a book about their family, they realized that their affected family members all had a certain mutation — and that they had a 50-50 chance of also having it. The Reiswig brothers then learned, Kolata writes, that they could get tested for the gene variant.
Marty Reiswig, she says, goes back and forth on getting tested.
"Sometimes I think, 'This is a terrible storm on the horizon that could absolutely devastate us, and I want to know if it is real or not,'" he tells her. "Other times I say, 'Gosh, if I do find out that it is real and I know I will die that way and I know probably the age I will die — that is an almost unbearable amount of information about my future.'"
Kolata adds that after joining a study and thinking about it further, Marty Reiswig decided against testing. His brother Matt, though, opted for it, and he doesn't have the mutation. A cousin, though, does.