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63 1 2 3 4 5 6 7 thing on their mind when they are going into the biopsy is about research. And weighing the -- let me call it autonomy rights of the individual which we give very robustly and fully when they are in the calm atmosphere of a research context versus when they come into the clinic and weighing that against the potential for those samples just not being available whatsoever. 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 I think that is what we struggled with here about whether or not to collapse. DR. MURRAY: Thank you, Steve. That was very helpful. DR. COX: So to go one step further that was the reasoning. So in my simple minded way what is the punch line? Zeke has filled in the boxes so what is the punch line, big picture punch line if we look at those boxes. First we have a ton of samples that were previously collected. Can we use them or not? Can we say -- okay, even though those were not -- and that is both from the point of view of research and from the point of view of the clinic, the -- if we are going to use them with identifiers we have got to go back and get consent, full consent. If we are not going to use them with identifiers, okay, it is okay to use them even though we do not have the consent
64 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 right now. That is what we are saying. Plus or minus the community interest. What about in the future? What is different about the future? There is only one thing different because using it with identifiers is no different whether we are doing it in the future or we are doing it later. We have not addressed using things with identifiers. Okay. Because we have not -- we have addressed it but we have not made any distinction. The only distinction is in the future if we are going to use things anonymously, okay, we get a general consent from people. We get that general consent whether they are in research or whether they are clinical. So what we have done is said the thing that is different in the future right now is that the Genetics Subcommittee is coming down as saying that we agree that there should be some general consent even if things are being used anonymously. What we have not done, okay, is changed anything about the status quo from the status quo of things that are being used with identifiers. That is the way I read the way the boxes are filled in and what the summary is. DR. MURRAY: Zeke, do you want to respond to
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NATIONAL BIOETHICS ADVISORY COMMISS
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I N D E X Welcome 1 Report from the
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