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219 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. CHILDRESS: What role advance plays in this? I mean, this is just before the research but it is hardly advance in the same sense that we are talking about so maybe we have the wrong language here. MS. BACKLAR: Correct. Maybe -- because since you notice in the RAD it really has to be tied to a specific research protocol. It is not just for any research that may come along. DR. CHILDRESS: But then that is -- then perhaps we are misleading. MS. BACKLAR: Right. DR. CHILDRESS: The report needs to be altered then and basically get rid of the language about research advance directive. DR. EMANUEL: Could you just tell me -- say I have a waxing and waning condition. I do not know. Manic depressive disorder or something. MS. BACKLAR: Right. DR. EMANUEL: How exactly -- and the researcher wants -- MS. BACKLAR: The research -- DR. EMANUEL: -- the researcher wants to get me at the depressive moment. Okay. That is whatever the research is. It has got to get me at that moment. Now how
220 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 is it going to do it? I mean, basically what you have described is informed consent. I do not see how it is anything different than informed consent. An advance directive -- MS. BACKLAR: I tell you what is advance about it. DR. CHILDRESS: It may be an improvement -- MS. BACKLAR: The advance part of it is in a sense the person is preparing in case they lose capacity and at a time that they lose -- they should lose capacity for decision making if they are in the research protocol, which might involve coming off medications or various things, that for sure they have with them a surrogate and an outside provider. So in a sense that is the advance part of it. While they have capacity to make decisions for themselves they will. DR. CHILDRESS: But we could simply require those mechanisms without connecting it with the notion of an advance directive. DR. EMANUEL: I also might mention that does not apply well to the dementia category, which at least from a numerical standpoint -- MS. BACKLAR: I understand that.
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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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