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 Tests Detect Alzheimer's Risks, Should Patients Be Told? 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Tests Detect Alzheimer's Risks, Should Patients Be Told?
This article is about whether people should be given tests that address their risk of getting Alzheimer's, and whether they should be told the results of the tests. And it's about physicians' views on the same topics.

There was a related discussion about a year ago on the local PBS radio station. The interviewee was Dave Iverson, who has Parkinson's Disease. His father had PD and his brother has PD. He was asked if he wanted to know whether he carried a genetic mutation associated with PD. He said he did not. He was willing to participate in research studies of his genetic profile but told researchers not to pass the results to him. I believe he also said that after he died, researchers could provide the info to his daughter, if she wanted to know.

There are obviously many viewpoints on these topics. Presumably medical ethicists will need to advise medical centers on how to proceed.

Robin



http://www.nytimes.com/2010/12/18/health/18moral.html

THE VANISHING MIND
Tests Detect Alzheimer’s Risks, but Should Patients Be Told?
By Gina Kolata
New York Times
December 17, 2010


Sat Dec 18, 2010 7:15 pm
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Joined: Sat Jul 31, 2010 5:28 pm
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Post Re: Tests Detect Alzheimer's Risks, Should Patients Be Told?
People should think long and hard about getting this kind of information. Information such as this, just as the gene for breast cancer, may play havoc with your ability to get long term health care insurance, plain old medical insurance, and even life insurance. And having the tests paid for out of pocket and the results given to you privately may still not be enough. If a person develops a dementia and knew about a genetic predisposition, and didn't disclose it under "other illnesses" or some such thing, they may find find themselves sued by the insurance conpany. Just a thought. Nan


Sat Dec 18, 2010 7:31 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Tests Detect Alzheimer's Risks, Should Patients Be Told?
It's an interesting thought, Nan. I have wondered if I would have married Dale if I had known that his sleep walking would develop into this.... if it has... I'm not sure I want to know that sort of thing either.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Dec 18, 2010 7:56 pm
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Location: SF Bay Area (Northern CA)
Post Re: Tests Detect Alzheimer's Risks, Should Patients Be Told?
Some knowledge can't be avoided: having a parent with dementia, increases one's own risk of developing dementia. I imagine the same is true for some types of cancer.


Sat Dec 18, 2010 8:06 pm
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Joined: Thu Dec 02, 2010 1:44 am
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Post Re: Tests Detect Alzheimer's Risks, Should Patients Be Told?
I'm with Dave Iverson, I would not want to know. Bernie


Sun Dec 19, 2010 5:25 am
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Joined: Tue Aug 17, 2010 9:20 am
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Location: So Cal
Post Re: Tests Detect Alzheimer's Risks, Should Patients Be Told?
After going through dementia with my husband, I'd want to know at my age (52) so that I can plan for my care and not put it all on my daughter. Of course I'd want to have all those insurances in place first. I would NOT, however, want my daughter to be able to find out if she is predisposed. She's only 26 and has a lifetime in front of her and I'd hate that knowledge to be ever-looming over her. She has watched her dad develop Lewy at the same time she watched her grandma develop Alzheimer's these past few years so she's already feeling that her chances of developing a dementia are greater than most, I'd hate to confirm that for anyone. Huge issue, huh? I'm wondering if we won't evolve into mandatory testing prior to qualifying for health or life insurance someday?

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sun Dec 19, 2010 8:48 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Tests Detect Alzheimer's Risks, Should Patients Be Told?
Sher,
I think you bring a valid idea here with possible testing in the future for dementia's, with our population living longer, I thought of this last night and wondered the same thing, who ever realized yr's ago we would all be tested for AIDS to get health and Life insurance !

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Irene Selak


Sun Dec 19, 2010 9:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Tests Detect Alzheimer's Risks, Should Patients Be Told?
I can visualize a Brave New World where a person's medical profile dictates most legal, financial and career situations. And when I read the novel [in my teens, I believe] genetic profiling was only on the drawing board and I saw the story as more metaphorical than literal. No more.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Dec 19, 2010 10:29 am
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