Entire Transcript in Adobe Acrobat Format - National Reference ...
Entire Transcript in Adobe Acrobat Format - National Reference ... Entire Transcript in Adobe Acrobat Format - National Reference ...
47 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. EMANUEL: Yes, that is right. MR. CAPRON: And he gets the 100 samples and they are labeled one to 100 and -- DR. EMANUEL: Right. MR. CAPRON: -- and the pathologist does not keep a record of which people those came from. DR. EMANUEL: Well, even if he does I mean we can play it through. But say he does keep a record for the most extreme case he keeps a personal record. I mean, one of the reasons for talking about the encryption barrier is to say that there is not -- you cannot walk backwards. MR. CAPRON: Well, encryption -- with barriers you can walk backwards but if there is anonymous samples with just one to 100 and he does not keep it you cannot. I mean, if he later -- now what we are -- it does seem to me that the genetics aspect comes in here. Suppose that what the researcher is doing is not asking for the medical record to find out about the sexual history or the gestational history of these women but is instead asking is there a gene here and he looks through these and he says, "In this group I get 88 of these women have a gene," and he goes out and he says to the pathologist, "Send me samples from 100 women who did not have this cancer." The pathologist sends them and he does
48 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 not find the gene in any of them. Now at that point if the sample is totally anonymous and he says, "I have got to tell these women something," the pathologist will say, "Sorry, there is no way I can. I just sent those out to you. I put numbers on them. There is nothing you can do." If he says to the pathologist, "I have got information that may be of relevance to those women and their sisters, and their daughters," and the pathologist says, "Oh, well, if that is really that is important I can -- we can tell those women to come in and see you because we have now found out which of them has this gene and they can then make contact or give us the names of people we should contact." Now to me those are different situations. Facially obviously different. It is a whole different set of considerations that should come in. DR. GREIDER: Can I make just one point, which is what you are also making -- not making and distinguishing -- is research and clinical care. Just because a researcher finds a particular mutation in the gene does not necessarily mean that becomes the norm in clinical care and that those people need to be told something because of one particular study.
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DR. EMANUEL: Yes, that is right.<br />
MR. CAPRON: And he gets the 100 samples and<br />
they are labeled one to 100 and --<br />
DR. EMANUEL: Right.<br />
MR. CAPRON: -- and the pathologist does not<br />
keep a record of which people those came from.<br />
DR. EMANUEL: Well, even if he does I mean we<br />
can play it through. But say he does keep a record for the<br />
most extreme case he keeps a personal record. I mean, one<br />
of the reasons for talk<strong>in</strong>g about the encryption barrier is<br />
to say that there is not -- you cannot walk backwards.<br />
MR. CAPRON: Well, encryption -- with barriers<br />
you can walk backwards but if there is anonymous samples<br />
with just one to 100 and he does not keep it you cannot. I<br />
mean, if he later -- now what we are -- it does seem to me<br />
that the genetics aspect comes <strong>in</strong> here.<br />
Suppose that what the researcher is do<strong>in</strong>g is<br />
not ask<strong>in</strong>g for the medical record to f<strong>in</strong>d out about the<br />
sexual history or the gestational history of these women<br />
but is <strong>in</strong>stead ask<strong>in</strong>g is there a gene here and he looks<br />
through these and he says, "In this group I get 88 of these<br />
women have a gene," and he goes out and he says to the<br />
pathologist, "Send me samples from 100 women who did not<br />
have this cancer." The pathologist sends them and he does