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9 1 2 3 4 5 contain information about sex, about background, about geography and some other matters but not sufficient information to walk back, as we use the metaphor, walking back across the barrier and figuring out from whom the tissue came. 6 7 8 9 10 11 12 13 14 15 16 So if you see the phrase or a variance of the phrase "research conducted in an anonymous matter" that is what we mean by it. It is the tissue samples and whatever information is bundled with the samples has gone through this encryption barrier and it would be impossible or unreasonably -- reasonably -- I am not sure quite what the phrase is there but it would be reasonable to think that the researcher could not walk back and get the individual's identity from the information the researcher has even with the aid of other kinds of publicly available databases. 17 18 19 20 21 22 23 24 That is really all I need to say. I would like to ask the other members of the Genetics Subcommittee to elaborate or correct what I have said and I would like to invite the other members of the commission to join in. David? DR. COX: So I think you have very fairly
10 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 stated the attractive aspects of this approach to dealing with stored tissue samples but it is particularly relevant for the large numbers of pathology samples that presently exist and then the clinical samples that are going to come in. It does not very well take into account potential future types of research that are going to require closer and closer interaction between the researcher and the subjects. Although it does take into account subject's viewpoints from the point of view of their privacy it does not take into account the subject's involvement in the design of the research studies at all. The other aspect of it is that in many ways for researchers it perpetuates a distancing of researchers from the research subjects at a time when the whole direction of much of the science is an increased involvement in relationship between researchers and their subjects so that I, for one, have sort of a difficult time balancing these different issues and I just wanted to mention what some of the down sides of this approach are. The final point that I would like to make is that any kind of such barrier that is put up to protect people is only as valuable and only as effective as its
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