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69 1 Dr. Old. 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 DR. DUMAS: I think I might be missing something but my lack of understanding might be useful in this case. It seems to me our basic principle is informed consent and if we have existing samples and it is possible to obtain informed consent isn't the question how to obtain that consent and if there is no way to obtain informed consent then there needs to be some statement about exceptions. Am I missing the point here? DR. MURRAY: Well -- MR. CAPRON: The exception is that they want to be able to use the samples without any consent. DR. DUMAS: Well, if it is not possible to get the consent but I am not hearing that the basic over arching principle is informed consent. And either you are able to get it or you are not. Now if you are not able to get it then you have to talk about the conditions under which you would be able to use the sample. DR. EMANUEL: Well, let me say I think informed consent for some research studies -- one of the reasons we made the distinction between using it in an anonymous manner and used in a potentially identifiable manner is that in an anonymous manner you are not linking a result with the person's sample.
70 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 The second thing is the issue here is it is impossible to identify the person or is it possible. This again is going to be a big spectrum. The question is how much effort is necessary to do that? Remember in this -- many of these people will already be dead. Many of these people -- you know, 20 percent of Americans move every year. Outside of a research setting where you are tracking them for some reason it is enormously difficult and you are not interested in the particular person. I would also say, Alex, on your remark it is not us. I mean, the current policy is no consent. Let's be -- DR. DUMAS: No consent? DR. EMANUEL: That is the current policy. DR. DUMAS: All right. Well, then -- DR. EMANUEL: Because this is existing data. DR. DUMAS: All right. And I will hold my comments because we are going to talk about this again but I really would urge that we put as our primary focal point informed consent and how to obtain it. DR. MURRAY: Steve? This is going to be the last comment from a commissioner before we move to Dr. Old. Steve?
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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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