Entire Transcript in Adobe Acrobat Format - National Reference ...

132
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
DR. LO: You said that your group was very much
against having recontact to provide research information
back to women and yet other advocacy groups have said,
"Give us the information and let us decide, do not tell us
it is still experimental, it is our body, let us decide."
Apparently you wanted an exception when there
was clinical information that would make a difference to
the woman, like a misdiagnosis, in either direction, more
serious or less serious. How about being recontacted to be
invited to participate in a research study in which it
would be an identifiable link study? Is there -- is that a
benefit? Is it a harm? It obviously is going to be
different for different women but what should the policy
be?
MS. BARR: Let me tell you about the policy and
the evolving policy. The policy of the Action Plan Working
Group was that recontact for additional research was enough
of an invasion that an individual should, indeed, agree to
it at the time they donate tissue. I am going in for
clinical work and one of the decisions I have to make is do
I want to be part of this ongoing or not.
The IRB community said that to promise that you
would not be recontacted unless you gave your permission,
which is what it is to ask that question, is misleading