“I’m certain that I want to know the results of my cheek swab,” Culbertson said. “I don’t know what the options would be, but I’m already having problems with memory, so I want to know.”
Melissa Hill, 64, of Columbus is not so sure. Watching her mother decline into dementia in the last few years has left her frightened about her own future.
“I would be more afraid of an Alzheimer’s diagnosis than anything else. If I do find out [my ApoE e4 status], I would like to know what I can do, but I have to decide if I want to know that,” she said.
People who agree to submit their DNA can decide if they want to learn their test results.
“There are many people who don’t want to know,” said Dorene Rentz, a neuropsychologist who is not involved with the Columbus Memory Project.
“What will you do if you find out?” said Rentz, co-director of the Center for Alzheimer Research at Brigham and Women’s Hospital in Boston. “Will you then restructure your life in such a way that you’re worried about yourself for the rest of your life?”
Project participants who want to know their ApoE e4 status must meet via Skype with a certified genetic counselor, who won’t yet know their results either. The counselor must verify that the participant is emotionally stable enough and understands enough to learn their genetic risk. “They have to know what it means to know this stuff,” Liss said. “We can’t just jump into it.”
Rufus Riggs, who lost his mother and a paternal aunt and uncle to Alzheimer’s disease, wants to know where he stands. At 74 years old, he hasn’t noticed any signs of memory loss, but he knows the risk might be in his genes.
“If so, I want to know. Whatever I can do to be active and self-sufficient, I will do, because if you don’t do anything, it’s like putting your head in the…