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231 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 like that. I just do not -- I do not know where we are in here. I know there is some underlying issue here that is not on the table. (Simultaneous discussion.) DR. CASSELL: The requirement could be for a drug company, Rhetaugh. DR. CHILDRESS: It may be that our chart is not as clear as it should be because, Eric, I am not sure how you would say in terms of non potentially beneficial research with greater than minimal risk that this is a best interest consideration. I mean, how could -- DR. CASSELL: Well, it is like the people who participate in Phase I trials. DR. CHILDRESS: They may want to but how do we say do it as a best interest consideration? DR. CASSELL: Well, because the person thinks that in most instances that some good should come of all this. DR. CHILDRESS: That is true for those who consent but I do not think you want to say that to the person who does not have the capacity to consent and that is the category we are talking about. MR. CAPRON: Eric, it does not fall within the usual understanding of best interest. It seems to me that
232 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 a person can make a statement that they have interests other than their physical well-being and you could say that is part of their best interest. But usually when we talk about best interest and about people who are incapable of deciding we are talking about something more immediate. It seems to me that the person who has a dread disease and says you want to do a study unconnected from my disease or connected but of no benefit to me and I am willing to participate is saying I am trading off in a larger existential sense my own personal benefit for some greater good and I am trying to give some meaning to my life right now that I am still a person capable of doing something useful for others even though I have this dread disease. DR. CASSELL: Well, I -- DR. CHILDRESS: But that is not -- MR. CAPRON: And you can say -- DR. CASSELL: Well, let's back off back to the other issue. MR. CAPRON: But the -- DR. CASSELL: Supposing there is no problem about that and I agree with all of it and then back off to the other category. We have no problem except that one? Is that our only problem?
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a person can make a statement that they have <strong>in</strong>terests<br />
other than their physical well-be<strong>in</strong>g and you could say that<br />
is part of their best <strong>in</strong>terest. But usually when we talk<br />
about best <strong>in</strong>terest and about people who are <strong>in</strong>capable of<br />
decid<strong>in</strong>g we are talk<strong>in</strong>g about someth<strong>in</strong>g more immediate.<br />
It seems to me that the person who has a dread<br />
disease and says you want to do a study unconnected from my<br />
disease or connected but of no benefit to me and I am<br />
will<strong>in</strong>g to participate is say<strong>in</strong>g I am trad<strong>in</strong>g off <strong>in</strong> a<br />
larger existential sense my own personal benefit for some<br />
greater good and I am try<strong>in</strong>g to give some mean<strong>in</strong>g to my<br />
life right now that I am still a person capable of do<strong>in</strong>g<br />
someth<strong>in</strong>g useful for others even though I have this dread<br />
disease.<br />
DR. CASSELL: Well, I --<br />
DR. CHILDRESS: But that is not --<br />
MR. CAPRON: And you can say --<br />
DR. CASSELL: Well, let's back off back to the<br />
other issue.<br />
MR. CAPRON: But the --<br />
DR. CASSELL: Suppos<strong>in</strong>g there is no problem<br />
about that and I agree with all of it and then back off to<br />
the other category. We have no problem except that one?<br />
Is that our only problem?
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