Alzheimer’s on a need-to-know basis…
Once again patients are told they can’t handle the truth (subscription only):
“The worry,” says Bill Thies, vice president of medical and scientific relations at the Alzheimer’s Association, is that patients may react to positive results in “inappropriate” ways. “Will they become fully depressed?” he says. “If that’s the case, then you’re going to obscure any public-health benefit.”
God forbid an Alzheimer’s diagnosis ever bums anyone out…Anyway, thankfully, not everyone presumes to know what’s best for you. And they appear to have actual science on their side:
“What we’ve been showing is that we can disclose APOE to people who are interested and they do not seem to have a whole lot of ill effects,” said Dr. Robert C. Green, a director of the study and a professor of neurology, genetics and epidemiology at Boston University. “There is some temporary increase in distress at six weeks, but at six months it’s gone.”
Some want the information to make financial and legal arrangements in case they become demented, and some who find out that they have e4 start trying to take better care of themselves. Not surprisingly, those who find out they do not have e4 are relieved, even though it does not guarantee that they are in the clear.
“Not everyone wants to know, but the people who want to know really want to know, and they have their own reasons,” Dr. Green said. “I think it’s a little patronizing for the medical establishment to say, ‘We could give you that test, but we don’t think you can handle it.’”
I work as an Assistant Professor in the Duke University Institute for Genome Sciences & Policy (although this site and its content are my own).
In 2007 I became the fourth subject in Harvard geneticist George Church's Personal Genome Project. As the PGP moves forward, I am chronicling the dawn of personal genomics, that is, people obtaining their genomic information for whatever reason(s) and figuring out what to do with it. I am interested in the relevant technologies and especially the attendant privacy and other ethical/legal/social issues.
This blog may also discuss some of my non-genome interests or, to paraphrase Dwight Yoakam, "Guitars, Cadillacs, hillbilly music, etc etc."
The header image comes from the Liz Lerman Dance Exchange's multimedia performance piece, "Ferocious Beauty: Genome."
January 6th, 2008 at 9:41 pm
[…] must agree with the opinion of Misha Angrist at Genomeboy: God forbid an Alzheimer’s diagnosis ever bums anyone […]
January 6th, 2008 at 11:41 pm
[…] must agree with the opinion of Misha Angrist at Genomeboy: God forbid an Alzheimer’s diagnosis ever bums anyone […]
January 7th, 2008 at 1:07 am
I spoke at a personalized medicine conference this past year. In my talk I mentioned Alzheimer’s disease. In the Q+A, a physician made a comment about how idiotic is would be to the learn about genetic predisposition to Alzheimer’s disease since no good therapies existed.
My response was that there are many reasons why someone might want to learn about predisposition to disease, even when therapies are not available. Including disease advocacy (i.e. joining a “race for a cure”), or in the specific case of Alzheimer’s, behavioral modifications like the avoidance of contact sports.
Later in the Q+A, Robert Green, who happened to be in the audience, stood-up and offered a voice of support to my line of reasoning. His research project is called the REVEAL study.
The physician made the comment approached me after the session and said that he was merely playing the role of the “devil’s advocate”. What is clear to me, is that this devil will continue to advocate for a long time to come and that there is a need for balancing points of view that still have not made it into the consciousness of experts.
Nice post.
Jason
January 9th, 2008 at 1:51 pm
[…] chimes in in the comments section of the previous post on the potential value of knowing one’s genotype: …there are many reasons why someone […]