Re: AF genetic - Ellinor research

[Guest guest]

In a message dated 10/26/04 12:56:57 PM Eastern Daylight Time,

quarteracreorchids@... writes:

> Research companies want more familles to participate, they should do it

> blind ... label a family " family x: mother, father, siblings, cousins... etc "

> .. and go from there. The " who " is completely irrelevant to the study. It's

> the familial link that's the important part.

>

If the group wants. I will contact Dr. Ellinor and specifically ask him about

patient confidentiality procedures, and report back to the group. What do you

all think?

Rich O

[Guest guest]

, thanks as always fo your factual and up-to-date responsiveness. My

family in fact is one of those in the case files of Dr. Ellinor at Mass

General.

He and his team are eager to hear from families where there are several AF

cases, and they are very willing to " come to you " to take the minor DNA

samples that are necessary ias they try to isolate the genes involved in

predispositions to AF. Unfortunately, all too many people are unwilling to

participate in such research, because of fears that somehow their information

will be " leaked, " so progress is slow. I had no problems, because I know the

safeguards for subject privacy on this kind of funded research are rigorous,

and certainly at this poiht there is not enough known about AF genetics to

penalize anyone's insurance, for example. So I would urge anyone whose

family does have several AF cases, especially if they fall in the same

bloodline side of the family, to contact him. Kathleen (24/7, atenolol,

digoxin,

coumadin)

[Guest guest]

If research companies want more familes to participate, they should do it

blind... label a family " family x: mother, father, siblings, cousins... etc " ..

and go from there. The " who " is completely irrelevant to the study.. it's the

familial link that's the important part.

I was labeled as having a form of rhumatoid arthritis several years ago, because

I have a genetic marker that is LINKED to people with this type of arthritis,

and I was having lots of lower back and hip pain at the time. I subsequently

went on thyroid medication and all trace of joint pain dissappeared, but yet my

medical record still shows this diagnosis.

I do not need another tag in my files to indicate some other chronic condition,

so would be very hesitant to submit to a genetic study where my personal

information was obtained. I'm sorry now that I did the first test, since I

fear it will come back to haunt me someday, yet my family would be perfect for

such a study on afib.

Stef.

kageygreenbay wrote:

, thanks as always fo your factual and up-to-date responsiveness. My

family in fact is one of those in the case files of Dr. Ellinor at Mass

General.

He and his team are eager to hear from families where there are several AF

cases, and they are very willing to " come to you " to take the minor DNA

samples that are necessary ias they try to isolate the genes involved in

predispositions to AF. Unfortunately, all too many people are unwilling to

participate in such research, because of fears that somehow their information

will be " leaked, " so progress is slow. I had no problems, because I know the

safeguards for subject privacy on this kind of funded research are rigorous,

and certainly at this poiht there is not enough known about AF genetics to

penalize anyone's insurance, for example. So I would urge anyone whose

family does have several AF cases, especially if they fall in the same

bloodline side of the family, to contact him. Kathleen (24/7, atenolol,

digoxin,

coumadin)

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Nothing in this message should be considered as medical advice, or should be

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[Guest guest]

--

>

> If the group wants. I will contact Dr. Ellinor and specifically ask him about

> patient confidentiality procedures, and report back to the group. What do

you

> all think?

> Rich O

Rich, that would be wonderful. Of course the data are all " blind, " otherwise it

wouldn't be decent research. Yet, because the individuals are often

scattered all over the place, somewhere there is a cross-tab of names

against the blind data. But please, I greatly support this kind of research,

else progress never gets made, and you are a visible and respected member

of this forum, so your input would be most welcome. (I have no personal

investment beyond my belief in the right way to accumulate valuable

knowledge). Kathleen