More on PB Comments

[Guest guest]

Beverly,

I wrote in response to your own post about Brown's not recommending

testing without a treatment available. I deleted that issue of CJDVoice

after responding. Perhaps that is simply how I read his comment.

At the Alzheimer's Association, we sometimes have people who want to be

tested. It's a little different because, in the vast majority of cases,

what people would be testing for is a gene on chromosome 19 that will not

tell them whether or not they are going to develop AD, but simply whether

or not they are at greater risk of developing it. In those cases, we do

not recommend testing unless someone is showing possible symptoms (in

which cases a positive test for the high-risk allele might provide

additional info during the process of diagnosis). In fact, it is

considered unethical to do such tests at the present time because having

the APOE-4 gene (the high-risk version) does not give definite

information and yet others (insurance companies, for instance) could use

that AGAINST the patient (e.g., to deny medical insurance).

There are also a small number of cases of AD which are inherited (which

are caused by genes on chromosomes 1, 14, and 21). Generally, this type

of AD is " early onset " (people may develop symptoms in their 40's or

early 50's). If a person has a strong family history of early-onset

dementia, then testing is an option, but we also recommend genetic

counseling so all the pros and cons can be discussed.

Getting back to Brown, keep in mind that the reporter was quoting

from a TELEPHONE INTERVIEW. Having done quite a few of these myself, I

know that comments can be highly edited and also that sometimes I wish I

had said something differently. Perhaps Dolly's suggestion is best: why

not contact Brown directly and ask him what he meant? If you

approach him in a spirit of understanding (rather than putting him on the

defensive), I'm confident you'll get a thoughtful response.

Elaine