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141 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 where your statements are in process very different from what NBAC is doing, and I applaud your process, is to first have a goal that you are striving towards and that goal is not just how you deal with tissue samples but it is how you do research with tissue samples. I would just like to note that because I think that is the problem you are dealing with. Not tissue samples in isolation. Secondly, is that by having a set of principles that you want to have guide what that product is going to be it helps then for you to define a process and that process of putting things in place for the whole endeavor is what you have done which is what NBAC has not done yet. So I really applaud this as a process. I think that it would be a really good foundation for us to not only pay attention to what the scope of the problem you are looking at but the process that you use and the kinds of things that we would like to come out with. So it was really extremely helpful. DR. MURRAY: Jim Childress would like to ask something. DR. SHAPIRO: Got to be a rock star, Jim. DR. CHILDRESS: The comment I am going to make actually connects with Zeke's discussion earlier this morning and the presentation. I think it is true that it
142 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 -- well, I think it is useful to get away from the language of ownership as long as we do not forget that quite often in the legal context ownership simply refers to a bundle of rights and the real question here we are raising is who has what rights over what. The reason for raising the point this way now is to now move to a consideration of whether we think in relation to Zeke's discussion presumed consent with the possibility of opting out really is something that captures all that we want. The reason I raise it -- if we think in the context of organ and tissue transplantation generally there is a lot of dispute about whether presumed donation, for example of corneas in states with certain medical examiner's laws, whether that really is justifiable presumption if people are not aware that their corneas can be taken. So this is actually now picking up the ownership point moving to Zeke. I would like to know a lot more about what we can expect people to understand so that we can interpret their silence or their failure to consent is actually consent because that seems to me to be critical for how the recommendations work out. DR. EMANUEL: Let me, I think, clarify. I think it is a good question. First, presumed consent with
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is -- well, I th<strong>in</strong>k it is useful to get away from the<br />
language of ownership as long as we do not forget that<br />
quite often <strong>in</strong> the legal context ownership simply refers to<br />
a bundle of rights and the real question here we are<br />
rais<strong>in</strong>g is who has what rights over what.<br />
The reason for rais<strong>in</strong>g the po<strong>in</strong>t this way now<br />
is to now move to a consideration of whether we th<strong>in</strong>k <strong>in</strong><br />
relation to Zeke's discussion presumed consent with the<br />
possibility of opt<strong>in</strong>g out really is someth<strong>in</strong>g that captures<br />
all that we want. The reason I raise it -- if we th<strong>in</strong>k <strong>in</strong><br />
the context of organ and tissue transplantation generally<br />
there is a lot of dispute about whether presumed donation,<br />
for example of corneas <strong>in</strong> states with certa<strong>in</strong> medical<br />
exam<strong>in</strong>er's laws, whether that really is justifiable<br />
presumption if people are not aware that their corneas can<br />
be taken.<br />
So this is actually now pick<strong>in</strong>g up the<br />
ownership po<strong>in</strong>t mov<strong>in</strong>g to Zeke. I would like to know a lot<br />
more about what we can expect people to understand so that<br />
we can <strong>in</strong>terpret their silence or their failure to consent<br />
is actually consent because that seems to me to be critical<br />
for how the recommendations work out.<br />
DR. EMANUEL: Let me, I th<strong>in</strong>k, clarify. I<br />
th<strong>in</strong>k it is a good question. First, presumed consent with