Aug 5, 2013

Would You Want to be Tested for the APOe4 Gene?

This is a question I’ve been giving a lot of thought to recently. There are many reasons why a person would want to be tested, but there are also reasons that make sense for refusing such testing. 
Would you want to be tested for Alzheimer's disease?

By Max Wallack
+Alzheimer's Reading Room

This is a question I’ve been giving a lot of thought to recently. There are many reasons why a person would want to be tested, but there are also reasons that make sense for refusing such testing.

Possible advantages include being more motivated to live a lifestyle that might reduce the risk of developing Alzheimer’s.

Why Did Grandma Put Her Underwear in the Refrigerator


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These can include proper diet, exercise, mental activities including new learning experiences, stress management control, and helpful pre-planning for possible future situations.

On the negative side, testing can result in problems with health insurance, especially the ability to purchase long term health insurance benefits. A lack of anonymity can even result in housing and employment discrimination.

My own preference would be for testing.

There are many clinical trials going on, and knowing one’s APOe4 status would make a person potentially able to participate in and benefit from one of these clinical trials. Also, even though everyone should follow the healthy lifestyle that might reduce the risk, in reality people are much more motivated to change their lifestyle when a concrete risk is staring them in the face.

Yet, I realize that in order for more people to decide to be tested, we have to somehow assure the confidentiality of the results, and we should also have a mechanism in place for people to receive counseling along with their results.

Within the next year, I will be applying to various medical schools. One of the interview requirements is being prepared to discuss an ethical issue of my choosing. I would like to prepare myself to discuss the pros and cons of genetic testing for Alzheimer’s disease.

It would be great if you could, in the comments section below, explain or discuss:

What motivated you to be tested and whether or not you are happy you made that decision?

If you have not been tested, what deters you from deciding to be tested?

Would assured confidentiality change your decision about being tested?

Would you prefer not to know?

Would the availability of helpful drugs change your decision?

I look forward to reading your comments.

+Max Wallack  is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at
Boston University School of Medicine. His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

He is also the author of "Why Did Grandma Put Her Underwear in the Refrigerator? An Explanation of Alzheimer's Disease to Children."