October 12th, 2011 at 9:25 am
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The Alzheimer’s gene: would you want to know?

by Carol Bursack

There are many diseases, such as cancer, where early knowledge can be a life saver. But, there are other diseases that can leave us with a murkier understanding of the value of early diagnosis. Alzheimer’s is one of those diseases. Recently, CBS News ran a segment about the DIAN study (Dominantly Inherited Alzheimer Network). DIAN is an international research partnership of scientists devoted to understanding a rare form of Alzheimer’s disease that is caused by a gene mutation. It generally strikes people at a relatively young age. Called early onset Alzheimer’s disease, this form strikes before the age of 65, but has been known to show symptoms in people as young as their mid-30s.

Alzheimer’s gene mutation

The news segment centers on a Seattle family. The father, Doug Whitney, is one of two siblings in a family of ten, who escaped early onset Alzheimer’s from which their mother suffered. However, most of his siblings have died from the disease. Whitney was tested by DIAN researchers and does not carry the Alzheimer’s gene. However, tests on both of his children show they do carry the gene. The family is participating in the DIAN study to help move research along with the hope that researchers will be able to find a prevention or cure for AD.

The DIAN Study homepage states:

DIAN is currently enrolling study participants who are biological adult children of a parent with a mutated gene known to cause dominantly inherited Alzheimer’s disease. Such individuals may or may not carry the gene themselves and may or may not have disease symptoms.

The Alzheimer’s gene: not everyone wants to know

A recent post on Eldercarelink.com about early Alzheimer’s diagnosis generated significant interest. Understandably, many people are conflicted. Knowing whether or not they carry the gene could determine–to some extent–how they live their lives. The knowledge may even have a bearing on insurance coverage or employment.

Yet, knowing that they don’t carry the gene is of great importance to many people. The only way to find out is to risk the opposite–finding out that they do. The Whitney family was hoping to set their minds at rest. This did not happen.

Is ignorance bliss? That’s a sticky question when it comes to Alzheimer’s. However, the willingness of families to subject themselves to a study such as DIAN is likely going to be the key factor to finding a prevention or cure for Alzheimer’s. For that reason, families with a history of early onset Alzheimer’s are encouraged to ask about studies.

The National Institutes of Health (NIH) keeps track of studies for those who are interested in other research.

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