Alzheimer’s research is moving toward a bold new era of dementia prevention. Last Tuesday a national project called GeneMatch, was launched by the Banner Alzheimer’s Institute in Phoenix, AZ. GeneMatch is a large scale effort to identify people at high genetic risk for developing Alzheimer’s. About 1300 high risk candidates will be asked to test a new drug designed to prevent Alzheimer’s.
The GeneMatch study will select participants through genetic testing. Researchers will test potential study candidates to determine if they have the APOE4 gene. This gene dramatically raises a person’s risk for developing Alzheimer’s. According to Beth McCarty Wood, senior genetics counselor for the project, only about 15% of the general population carries a copy of this gene. Just 2% of the population has two copies of E4 (one from each parent.) People who have inherited two E4 genes have a 30-55% risk of developing Alzheimer’s.
I’m writing about this to study to inform those who feel their situation, and their courage, is at the right level for getting involved. No one in my family has had genetic testing. I never wanted to find out if I’m carrying genetic markers for dementia. But I have friends who have watched generations of their relatives fall victim to Alzheimer’s. For them, the circumstances are urgent. They want to know their chances of facing the same diagnosis.
The GeneMatch study is different from other studies because it will offer support to people who discover they have the APOE4 gene. Counseling will be provided by researchers from the University of Pennsylvania. Of course counseling may not resolve all concerns, such as fear of blow back from insurance companies. According to Ms. Wood, federal law protects study participants against discrimination by health insurers and employers — but not by long-term care and life insurance providers.
Anyone interested in participating in the study can get more details from the GeneMatch site. The project may be the first to actually prevent people from developing this awful disease.