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With Mayo Clinic health education outreach coordinator Angela Lunde
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March 11, 2008 4:05 p.m.
A word of caution on genetic tests
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By Angela Lunde

You may be hearing that the first genetic test to be sold directly to consumers will become available this spring — a saliva test that can determine whether an individual has an increased risk for Alzheimer's.

A test of this nature may peak curiosity and interest for many of you; however, with a devastating disease like Alzheimer's our desire for answers is often a good news, bad news deal. There is no doubt that we want, and expect, the scientists to make progress in understanding the processes that cause Alzheimer's and other dementias.

Yet, these processes are complex and it is taking a great deal of time for the scientists to piece together the puzzle. As we wait, we may be inclined to use some of the pieces of the puzzle even when the picture is incomplete. So it is with some of the genetic information that has been gleaned over the past few years, especially regarding the apolipoprotein E gene (ApoE).

In general, researchers have identified an increased risk of developing Alzheimer's related to the apolipoprotein E gene found on chromosome 19. The ApoE gene comes in several different forms. The form or type we each carry influences our risk. However, there is no form that indicates Alzheimer's is certain. Some people carry the highest risk form and do not develop clinical signs of Alzheimer's, while others will.

So, having said all of this, one company is providing a test directly to the public that will provide their unique ApoE gene type. There are concerns with this. First, medical professionals believe that genetic testing should always be done as part of a process that also includes genetic counseling, which does not appear to be the case here.

Moreover, many people who don't carry the risky ApoE gene still develop Alzheimer's and conversely many people that carry one copy of it, don't get Alzheimer's. Bottom line, knowing your own gene type tells you nothing definitive about your risk of developing Alzheimer's. This is why the overwhelming consensus in the field has been not to offer ApoE genotyping to the general public. Yet people want answers and at least one company is prepared to capitalize on that.

6 comments posted
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June 4, 2008 2:33 p.m.
Something to be aware of. Statin drug side effects (amnesia and joint/muscle pain) may appear to be Alzheimer's and arthritis. For information: Business Week article Jan 17, 08.
- Colby
April 23, 2008 6:34 p.m.
My father and mother married a brother and sister. The sister of my mother died from Alzheimer's Disease, She was 82 years old. I also wonder if I would carry this gene. But would I have testing ,I don't know for sure.
- Lorrie Pappas
March 31, 2008 10:17 a.m.
My mother hid her symptoms for several years before Alzheimer's Disease overtook her mind at the age of 69. She lost her ability to speak at age 70 and her system finally shut down, just short of her 75th birthday. My sister and I take after her side of the family and we are both scared for our families if we inherit it also. I am worried about genetic testing because the insurance company would have information about this and could possibly mean that I wouldn't be insured if I was to find I would develop AD in the future.
- Marcia Long
March 14, 2008 3:09 p.m.
Thank you for an interesting article discussing the pros and cons of genetic testing for Alzheimer's disease. I would like to point out that the company I believe you are referring to not only includes genetic counseling, but mandates it. You are required to go through a screening process, pre-test education and a phone consultation with a genetic counselor in order to receive your genotype results.
- Karen Hanson, M.S., M.B.A., Director of Clinical Operations, Smart Genetics, Alzheimer's Mirror
March 13, 2008 11:38 a.m.
I am 38 and my Dad has EOAD. We found out 3 years ago and my Dad ia already in the last stages of AD. My Dad is 57. I am scared to death for my Dad my step Mom who takes care of him and me. Having it be possible that this could happen to me is a nightmare. I dont' understand. None of my family history show anyone else with AD. I am really scared and even after reading this article I am going to call my doctor and get her advise. This is such a horrible sickness.
- Charlene Milligan
March 12, 2008 10:18 p.m.
Thank you so much for clarifying this issue!
- Laurie Pepper
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