Talk of The Villages Florida - View Single Post - Should I join Alzheimer's study?
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Old 01-26-2015, 11:28 AM
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Senior Citizen:....Just say NO. An experimental drug test? You who try to live simply & eat purely?
Thanks for your reply. I did say no. Not in so many words but right after the very first reply on this thread (from naneiben) I called Compass Research and cancelled my appointment. I never thought there would be so many well meaning replies. By the time I came back to this site, I was surprised to find 3 pages of replies. Thanks!

You wonder why, of all people, I made an appointment in the first place. Well, it's just the strange way that it happened, I was caught off-guard. My first thought, as I read the ad in the newspaper, was that it would be an observational lifestyle study and I was excited about the possibility of being a part of it. I've been a participant in one study that has been going on for nearly 20 years now and I like being a part of it (NIH_AARP Diet and Health Study).

When the call came I was surprised to hear that it would be an Alzheimer's study and would involve taking an experimental drug. The very first thing I said to the woman caller was: "I think I should just forget about it because I'm against taking drugs." And it was as if she didn't want to take no for an answer because she then suggested that I get tested first and then make up my mind after talking to the doctor. She reassured me that I would be under no obligation to participate in the study.

So, at that time, I thought, okay, I'll get a free gene test for Alzheimer's. And that was the hook that drew me in. Only a short time later did I start thinking that it might be a bad idea to find out if I have such a gene. And I began to wonder if the doctor would use that test as a way to reel me in as a participant. (Sort of like the car dealer who offers 5 gold coins if you come in to take a test drive.)

Only today did I learn that the results of the gene test would not be disclosed to the prospective participant or to the doctor.