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

247
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
would set up in place a standard that would essentially
stop such research if there were -- if that is where we
think we are going. I do not think we want to do that. I
think we want to look at feasible and useful ways of
creating a participation for those subjects that assures
the research goes forward because it is crucial and at the
same time protects them.
I think that is what Trish was trying to bring
to us in looking at as one tool the research advance
directive. But we certainly do -- and I was very troubled
to see that families were removed from that potential role
with some of these populations.
But I do not want to have the conversation
continued with some assumption that we are willing to give
up this research because we cannot seem to find a way to
adequately protect subjects and yet let this important
research go forward. Remember greater than minimal risk is
not necessarily extraordinarily risky sets of experiments.
DR. CHILDRESS: It seems to me that this is one
place, let me get some feedback, where we could profit a
great deal from some input from investigators and others
over the next few weeks and I am not necessarily talking
about a study but get some feedback on this. One of the --
as you recall from the discussion with the Genetics