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105 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 says? What it says is you cannot use it unless the IRB says you can use it? DR. OLD: I think -- yes, I think we are getting into some semantics here. I think that you cannot use it anonymized -- MR. CAPRON: I do not think this is semantics. (Simultaneous discussion.) DR. OLD: You cannot -- it is not covered under using it anonymized. It is not covered under this part that says that sharing can be done if it is anonymized. If it is not related to the original informed consent you cannot use it anonymized. You need to do these other things that it talks about. MR. CAPRON: What other things does it talk about? DR. OLD: Go to the IRB. DR. MURRAY: I think I detect a level of fatigue setting in and we really do need to take a break. I want to thank Dr. Susan Old very much for coming. DR. OLD: Thank you very much. DR. MURRAY: Can you stay for a while, Dr. Old? DR. OLD: Sure. DR. MURRAY: Thank you. We will reconvene in -- I have about 21 after.

106 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 We will reconvene -- try to reconvene at 10:30. (Whereupon, at 10:22 a.m. a brief break was taken.) DR. MURRAY: I want to thank Patricia Barr for joining us this morning. Patricia, I have heard a great deal about you. Can we provide a microphone for Patricia Barr to use? We have got one. CONSUMER PERSPECTIVES ON CURRENT ISSUES (Slide.) MS. BARR: It is easy for me to speak strongly about this topic because I have been working on it for a long time. I am an attorney. I come from Vermont. I am the chair of the Ethics Subcommittee of the National Action Plan on Biological Resources and I have been for the last six years a very active member on the National Breast Cancer Coalition. The Coalition in '93 had a campaign in which we called for a national partnership, public and private, to look at key issues in breast cancer and it was out of that petition campaign, which collected 2.6 million signatures that we developed the National Action Plan in Breast Cancer, and then I was lucky enough to be appointed to do some work with that group.

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We will reconvene -- try to reconvene at 10:30.<br />

(Whereupon, at 10:22 a.m. a brief break was<br />

taken.)<br />

DR. MURRAY: I want to thank Patricia Barr for<br />

jo<strong>in</strong><strong>in</strong>g us this morn<strong>in</strong>g.<br />

Patricia, I have heard a great deal about you.<br />

Can we provide a microphone for Patricia Barr<br />

to use? We have got one.<br />

CONSUMER PERSPECTIVES ON CURRENT ISSUES<br />

(Slide.)<br />

MS. BARR: It is easy for me to speak strongly<br />

about this topic because I have been work<strong>in</strong>g on it for a<br />

long time.<br />

I am an attorney. I come from Vermont. I am<br />

the chair of the Ethics Subcommittee of the <strong>National</strong> Action<br />

Plan on Biological Resources and I have been for the last<br />

six years a very active member on the <strong>National</strong> Breast<br />

Cancer Coalition. The Coalition <strong>in</strong> '93 had a campaign <strong>in</strong><br />

which we called for a national partnership, public and<br />

private, to look at key issues <strong>in</strong> breast cancer and it was<br />

out of that petition campaign, which collected 2.6 million<br />

signatures that we developed the <strong>National</strong> Action Plan <strong>in</strong><br />

Breast Cancer, and then I was lucky enough to be appo<strong>in</strong>ted<br />

to do some work with that group.

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