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bioethics.georgetown.edu
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67 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 forward to the -- DR. EMANUEL: Well, you raised the objection in the existing samples first. So let's just talk about the existing samples. I am going -- I have a pathology lab. It has got hundreds of thousands of samples. MR. CAPRON: I would say those can only be provided on a truly anonymous basis. DR. EMANUEL: I ask you what does truly anonymous mean to you separate from the -- MR. CAPRON: It is not encrypted. Anonymous. It means that there is -- that you are getting samples that -- DR. MURRAY: Could sex go forward? MR. CAPRON: Excuse me. DR. MURRAY: Male or female? DR. EMANUEL: Could any clinical information be attached to the sample? DR. MURRAY: Age? Or could go nothing when you said nothing? MR. CAPRON: I would say that if there is a clinical category -- DR. MURRAY: Disease. MR. CAPRON: -- and you are asking for a group of samples of males or females or people within a certain

68 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 age range you can get a group of those samples but among the samples individually there is no encryption. DR. MURRAY: We are going to have to come back to this because I think I disagree pretty strenuously. DR. EMANUEL: I am not sure what you mean. I am not sure what you mean by -- MR. CAPRON: Your example of the 108 breast cancer or whatever samples. DR. EMANUEL: Yes. MR. CAPRON: All that you wanted was send me your breast cancer -- DR. EMANUEL: No, no. With attached clinical information but not identifiers. That is what we are distinguishing. No social security, no birth date, but age, clinical course -- whether the -- I mean the essential information being whether the cancer recurred or not. DR. MURRAY: I think we just need to think about this one because we will come back to this but I do not -- we have guests here and I do want to -- we have to let our guests speak and I have a feeling the issues will come up as they speak so it is not like we are completely suspending this conversation. I know Rhetaugh had her hand up and I want to give her the last word now and then we are going to turn to

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age range you can get a group of those samples but among<br />

the samples <strong>in</strong>dividually there is no encryption.<br />

DR. MURRAY: We are go<strong>in</strong>g to have to come back<br />

to this because I th<strong>in</strong>k I disagree pretty strenuously.<br />

DR. EMANUEL: I am not sure what you mean. I<br />

am not sure what you mean by --<br />

MR. CAPRON: Your example of the 108 breast<br />

cancer or whatever samples.<br />

DR. EMANUEL: Yes.<br />

MR. CAPRON: All that you wanted was send me<br />

your breast cancer --<br />

DR. EMANUEL: No, no. With attached cl<strong>in</strong>ical<br />

<strong>in</strong>formation but not identifiers. That is what we are<br />

dist<strong>in</strong>guish<strong>in</strong>g. No social security, no birth date, but<br />

age, cl<strong>in</strong>ical course -- whether the -- I mean the essential<br />

<strong>in</strong>formation be<strong>in</strong>g whether the cancer recurred or not.<br />

DR. MURRAY: I th<strong>in</strong>k we just need to th<strong>in</strong>k<br />

about this one because we will come back to this but I do<br />

not -- we have guests here and I do want to -- we have to<br />

let our guests speak and I have a feel<strong>in</strong>g the issues will<br />

come up as they speak so it is not like we are completely<br />

suspend<strong>in</strong>g this conversation.<br />

I know Rhetaugh had her hand up and I want to<br />

give her the last word now and then we are go<strong>in</strong>g to turn to

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