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53 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 they did not know they were at when they go to fill out their next life insurance policy. Have you ever been tested for X, Y, Z gene? DR. MURRAY: Excuse me, Alex. I am just concerned about time. We actually -- the issues you are talking about right now are exactly the ones that we, ourselves, are wrestling with and want to talk about the circumstances under which, if ever, we would want to say there would be even a very rigorous procedure by which you would ask permission to go backwards and find out the identities of persons. MR. CAPRON: You have not come up with -- DR. MURRAY: We have not made a firm and full decision. We are fully aware of the kinds of risks you have talked about but we -- I mean, we want to have you involved and everybody here involved in that conversation which Trish and Larry and others are going to lead but I want to do that a little after 10:00. So if we could just allow Zeke to go through the rest of the boxes and the rationale for them. MR. CAPRON: Fine. DR. MURRAY: Thank you. DR. EMANUEL: I mean, I think that you have a box here that sets a standard policy recognizing that there
54 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 may be exceptions. The issue is what is the standard operating policy without extraordinary circumstances? Let me distinguish going down here in that first column from a situation where you might want to implicate a community or your research might want to implicate a community. So, for example, you go through a Tay-Sachs bank where the samples were collected, you know, might now be completely anonymous, maybe the samples had no information but the results could have implications for a community. And in that situation we suggested -- again that is something actually the current regs do not recognize. We have made some suggestions here. MR. CAPRON: You have gone through the word "consultation." DR. MURRAY: That is the working term right now. I am sorry that "consent" even appears there but consultation is the current. MR. CAPRON: That is good. DR. MURRAY: Yes. DR. EMANUEL: But what appears here is individual consent and community consultation. MR. CAPRON: In the previous box. DR. MURRAY: Yes.
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they did not know they were at when they go to fill out<br />
their next life <strong>in</strong>surance policy. Have you ever been<br />
tested for X, Y, Z gene?<br />
DR. MURRAY: Excuse me, Alex. I am just<br />
concerned about time. We actually -- the issues you are<br />
talk<strong>in</strong>g about right now are exactly the ones that we,<br />
ourselves, are wrestl<strong>in</strong>g with and want to talk about the<br />
circumstances under which, if ever, we would want to say<br />
there would be even a very rigorous procedure by which you<br />
would ask permission to go backwards and f<strong>in</strong>d out the<br />
identities of persons.<br />
MR. CAPRON: You have not come up with --<br />
DR. MURRAY: We have not made a firm and full<br />
decision. We are fully aware of the k<strong>in</strong>ds of risks you<br />
have talked about but we -- I mean, we want to have you<br />
<strong>in</strong>volved and everybody here <strong>in</strong>volved <strong>in</strong> that conversation<br />
which Trish and Larry and others are go<strong>in</strong>g to lead but I<br />
want to do that a little after 10:00.<br />
So if we could just allow Zeke to go through<br />
the rest of the boxes and the rationale for them.<br />
MR. CAPRON: F<strong>in</strong>e.<br />
DR. MURRAY: Thank you.<br />
DR. EMANUEL: I mean, I th<strong>in</strong>k that you have a<br />
box here that sets a standard policy recogniz<strong>in</strong>g that there