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11 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 ability to limit loopholes for people to go through it. I must say that it is easy for commissions like this to talk about how encryption completely limits loopholes and on the other hand in reality have it simply be on a piece of paper and not how it works. If the commission sets up things that work on paper but does not work in reality I am not sure that we are helping. So this is not -- I just wanted to talk about what some of the negative sides of this approach are and perhaps by considering them and having some flexibility with this we may make it more practical for research in the future. DR. MURRAY: I certainly agree with the latter two points you made as I understand them. I mean, if we recommend something which either is impossible to implement in practice or would be widely abused then I think we have not done our job well. I do not think that will be the case but we need to be cautious about those options. In the former you are concerned about the distancing of researchers and subjects, et cetera, but this is not the only model as you know for research with tissue. There is -- you can do research with tissue where the tissue is used in an identifiable manner but a requirement is then upon the researcher to get express informed consent
12 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 for each -- for the particular use of the tissue envisioned is very powerful. So I think there is not a distancing -- we are looking at the -- we are looking at cases in which the researcher for a variety of reasons may not need that kind of close contact and may want to use either large amounts of tissue or tissue that is with relatively small amounts of additional information. So there are other ways of doing it. There need be no necessary link between this proposal and a further distancing between researchers and subjects in those kinds of cases where distancing would be inappropriate. DR. COX: Just one quick follow-up point. I quite agree with that except I am basing my comments particularly with my experience as a geneticist because genetics research -- in fact, we are the Genetics Subcommittee -- I am not saying that genetics, you know, is inherently different from other types of medical information but genetics is only as good as the definition of the phenotype hooked up with the genotype. So, I think, at one sort of fairly extreme end of researchers that need to have close relationship with the phenotype I think the geneticists are very much on that one end. So that is sort of why I am making my comments.
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ability to limit loopholes for people to go through it. I<br />
must say that it is easy for commissions like this to talk<br />
about how encryption completely limits loopholes and on the<br />
other hand <strong>in</strong> reality have it simply be on a piece of paper<br />
and not how it works. If the commission sets up th<strong>in</strong>gs<br />
that work on paper but does not work <strong>in</strong> reality I am not<br />
sure that we are help<strong>in</strong>g.<br />
So this is not -- I just wanted to talk about<br />
what some of the negative sides of this approach are and<br />
perhaps by consider<strong>in</strong>g them and hav<strong>in</strong>g some flexibility<br />
with this we may make it more practical for research <strong>in</strong> the<br />
future.<br />
DR. MURRAY: I certa<strong>in</strong>ly agree with the latter<br />
two po<strong>in</strong>ts you made as I understand them. I mean, if we<br />
recommend someth<strong>in</strong>g which either is impossible to implement<br />
<strong>in</strong> practice or would be widely abused then I th<strong>in</strong>k we have<br />
not done our job well. I do not th<strong>in</strong>k that will be the<br />
case but we need to be cautious about those options.<br />
In the former you are concerned about the<br />
distanc<strong>in</strong>g of researchers and subjects, et cetera, but this<br />
is not the only model as you know for research with tissue.<br />
There is -- you can do research with tissue where the<br />
tissue is used <strong>in</strong> an identifiable manner but a requirement<br />
is then upon the researcher to get express <strong>in</strong>formed consent
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