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13 1 2 3 4 5 6 7 8 9 DR. MURRAY: Right. Thanks, David. Alex? MR. CAPRON: I think that I would really understand this only as I begin to see what consequences you think grow from the description that has been given here but I would like to begin that process by asking you whether the category here is the one which is described on the charts that we were given as samples that are to be used in an individually anonymous manner. Is that correct? 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 DR. MURRAY: I have not seen this morning's version of the chart. That is my understand, yes. MR. CAPRON: If that is the case I want to suggest very strongly that we consider separating into two categories what you seemed to have lumped into one. As I understand it, there are any number of -- DR. EMANUEL: Alex, maybe I could explain the chart before we already divide it and we break it apart. MR. CAPRON: Well, let me make my comment first because I think if -- you can respond to it. As I understand it, there are any number of situations in which researchers are interested in samples which have no identifiers at all on them, that is to say if they are looking back at the PKU samples and they have
14 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 10,000 of them and they just want to ask is another -- what is the prevalence of another gene in the population of babies born in Denver in 1996 or something. They do not have to know anything about it and that is truly an anonymous sample. It seems to me what you have described here is something that would be more correctly described as the use in an encrypted manner and to lump together something which is anonymous with something which is encrypted is to me a basic mistake and I would be very disappointed to see us move in that direction. I look here and I see -- this is a problem with graphics rather than having text -- what I see here is something which says it has a sample and on one side it has the name on the sample and in another one it has a number, and then it has something called "medical record," which on one side has a name on it and another has a number on it. Now you have made certain comments, Tom, and I think this is relevant to David's comments a moment ago, about what that information would be. But if we were to literally publish this chart as our explanation of what it meant to encrypt something I would say that simply underlines to me the problem with calling this anonymous research.
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