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Take Stable People and Genetic Counselors

Posted Jul 16 2009 10:49pm
From Bob Green's Study which is being held up as:

"SEE, NO ONE FREAKS OUT WHEN THEY GET GENETIC TEST RESULTS"

A 90-minute, semiscripted groupsession that was led by the genetic counselor described thelimitations ofAPOEtesting, the absence of a medical benefitof such testing, and the format for communication of the risk.

All subjects later met individually with the genetic counselorfor the drawing of blood samples, which were sent to AthenaDiagnostics forAPOEgenotyping.

Subjects were then randomlyassigned to receive the genotyping results (the disclosure group)or not to receive the results (the nondisclosure group).

Subjectsin the nondisclosure group were individually shown two charts:one showing the incidence of Alzheimer's disease in the generalpopulation according to age and another showing the sex- andage-specific incidence of the disease among first-degree relativesof patients with Alzheimer's disease.

Subjects in the disclosuregroup were shown the same curves with an additional line fortheir genotype-specific risk .They also received their lifetime cumulative incidence riskby the age of 85 years.

Subjects were told theirAPOEgenotypeand were given written reports of their lifetime cumulativeincidence risk and remaining incident risk.

Noneof the subjects had high anxiety or depression scores at baseline,which would have excluded them from the study.

So what you are saying is, we took away all the unstable people, then gave a 90 minutes genetic counseling session to ALL participants and everyone that got the APOEe4 genotype seemed to handle it ok.......

What a crock of Horse$h!t
This actually got published in the NEJM? Even worse, now some dumb marketing rep can say

"According to a study in the prestigious NEJM, people can handle genetic test results when you give them to them"

I am so fed up with this crap I could scream.

For a fresh breath read the editorial

Effect of Genetic Testing for Risk of Alzheimer's Disease
Rosalie A. Kane, Ph.D., and Robert L. Kane, M.D.

The study by Green et al. is a rare and welcome trial of a processthat might inform ethics guidelines.

But how reassured should
we be that testing and disclosure would not be harmful? Noneof the subjects had high anxiety or depression scores at baseline,which would have excluded them from the study.

Presumably, subjects
who agreed to participate were sufficiently indifferent to thepotential test results to accept randomization and thus arenot representative of those who have a strong perceived needto know or need not to know. It seems possible that some subjectswere unable to interpret the data.

Despite the rhetoric of a
new patient-centered, evidence-based society, we remain largelyinnumerate and poorly equipped to comprehend statistical probabilities.

The Sherpa Says: Another study of hype! Take Stable People and Genetic Counselors, present data over 90 minutes and whaddya get. No big deal. Just like this study.
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