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253 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 separately and call them by some more descriptive term. I think we are going to have this problem as long as we are lumping together disparate groups of people and that is where the problem lies. DR. CHILDRESS: But we are interested, in part, in what they share and it is how we described what level used for what they share that becomes critical for the report. DR. SCOTT-JAMES: But what they share is not really always shared because some of the persons covered under this chapter would be incapacitated almost all the time. Some others would be rarely incapacitated. We even put children in here and we tried to fix that a bit by referring to younger children but we even put children in here who are developmentally appropriate in their decision making. So it is just -- MR. CAPRON: That is one of the reasons we dropped impairment. DR. SCOTT-JONES: Right. DR. CHILDRESS: Zeke -- oh, sorry, I missed the comment. MR. CAPRON: Well, that is one of the reasons we dropped impairment because a child of seven who does not have an adult's decision making capacity is not impaired,

254 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 it is a normal child, but they do not have full decision making capacity. In some ways the question that Laurie was raising before about people who are born with disorders which make them always unable to participate in decisions are not even covered by this report as it is now entitled. They are not of questionable decision making capacity. They lack decision making capacity. I mean one escape is to say this report narrowly addresses the category of people who go in and out of decision making capacity and where you have to make certain in any circumstance where they are when you are engaging them in the consent process. DR. CHILDRESS: Zeke has a creative solution. DR. EMANUEL: No, no, no. I am struck as I was struck actually this morning by the fact that we seem to all be in the grip of a different kind of picture as to who these -- fit into each of these boxes. It may be that what is in your mind, Alex, is a certain kind of experiment that really stuck out -- stuck with you and I may have a different kind of experiment as the sort of paradigm that I am thinking these rules ought to apply to. Part of the reasons we are at loggerheads is because we have not made these distinctions.

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it is a normal child, but they do not have full decision<br />

mak<strong>in</strong>g capacity.<br />

In some ways the question that Laurie was<br />

rais<strong>in</strong>g before about people who are born with disorders<br />

which make them always unable to participate <strong>in</strong> decisions<br />

are not even covered by this report as it is now entitled.<br />

They are not of questionable decision mak<strong>in</strong>g capacity.<br />

They lack decision mak<strong>in</strong>g capacity.<br />

I mean one escape is to say this report<br />

narrowly addresses the category of people who go <strong>in</strong> and out<br />

of decision mak<strong>in</strong>g capacity and where you have to make<br />

certa<strong>in</strong> <strong>in</strong> any circumstance where they are when you are<br />

engag<strong>in</strong>g them <strong>in</strong> the consent process.<br />

DR. CHILDRESS: Zeke has a creative solution.<br />

DR. EMANUEL: No, no, no. I am struck as I was<br />

struck actually this morn<strong>in</strong>g by the fact that we seem to<br />

all be <strong>in</strong> the grip of a different k<strong>in</strong>d of picture as to who<br />

these -- fit <strong>in</strong>to each of these boxes.<br />

It may be that what is <strong>in</strong> your m<strong>in</strong>d, Alex, is a<br />

certa<strong>in</strong> k<strong>in</strong>d of experiment that really stuck out -- stuck<br />

with you and I may have a different k<strong>in</strong>d of experiment as<br />

the sort of paradigm that I am th<strong>in</strong>k<strong>in</strong>g these rules ought<br />

to apply to. Part of the reasons we are at loggerheads is<br />

because we have not made these dist<strong>in</strong>ctions.

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