Entire Transcript in Adobe Acrobat Format - National Reference ...
Entire Transcript in Adobe Acrobat Format - National Reference ... Entire Transcript in Adobe Acrobat Format - National Reference ...
129 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 off a lot of choices for some participation? My view is yes. Others might not and they can say no. MR. CAPRON: And how do they say no? MS. BARR: They say no by not agreeing to research or not agreeing to other research in the consent but at least that gets out to the public, which has a number of benefits. It allows individuals to participate. It raises our confidence in the research enterprise because a lot of people are participating and there is some exposure. Now the issue of fiduciary -- MR. CAPRON: May I ask you -- DR. MURRAY: Alex, I am going to have to -- MR. CAPRON: Well, let me -- DR. MURRAY: In the interest of time, we have about 30 minutes left for all of this morning's conversation, unless it is really urgent I am going to ask just to let Pat finish. MS. BARR: Okay. On the issue of fiduciary you have identified the traditional notion of what a fiduciary is and I am perfectly willing to change the word but it seems to me that what we are talking about here is that the pathologist has to stand apart from his or her world as researcher and that they have no higher right to use the
130 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 tissue that they hold than anybody else. DR. MURRAY: Thank you. MR. CAPRON: And public confidence? MS. BARR: And the public confidence issue is exposure -- public exposure of this kind of debate. IRB's, local IRB's having a duty to inform their communities of what they do in some way through local hospital newsletters or whatever, guidelines for that sort of thing. Ensuring that communities of interest have a role in design of research and advisors to research panels, and advisors to consortiums. That would be a -- those three things would move us forward again incrementally but significantly. DR. MURRAY: I have noted Bernie, Zeke, Carol and David expressing an interest to say something. If anybody else does or I have missed them please let me know. Bernie? DR. LO: I want to thank you for your presentation and also the material you gave us. I have several questions all in the theme of trying to understand better the point of view of patients living with conditions for which these research might be done. First, you said -- I think your message came through very clearly about the urgent need to do research
- Page 81 and 82: 78 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 83 and 84: 80 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 85 and 86: 82 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 87 and 88: 84 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 89 and 90: 86 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 91 and 92: 88 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 93 and 94: 90 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 95 and 96: 92 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 97 and 98: 94 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 99 and 100: 96 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 101 and 102: 98 1 2 3 4 5 6 7 8 9 10 11 12 13 14
- Page 103 and 104: 100 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 105 and 106: 102 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 107 and 108: 104 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 109 and 110: 106 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 111 and 112: 108 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 113 and 114: 110 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 115 and 116: 112 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 117 and 118: 114 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 119 and 120: 116 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 121 and 122: 118 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 123 and 124: 120 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 125 and 126: 122 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 127 and 128: 124 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 129 and 130: 126 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 131: 128 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 135 and 136: 132 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 137 and 138: 134 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 139 and 140: 136 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 141 and 142: 138 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 143 and 144: 140 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 145 and 146: 142 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 147 and 148: 144 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 149 and 150: 146 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 151 and 152: 148 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 153 and 154: 150 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 155 and 156: 152 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 157 and 158: 154 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 159 and 160: 156 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 161 and 162: 158 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 163 and 164: 160 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 165 and 166: 162 1 2 3 4 5 6 We will adjourn now
- Page 167 and 168: 164 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 169 and 170: 166 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 171 and 172: 168 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 173 and 174: 170 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 175 and 176: 172 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 177 and 178: 174 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 179 and 180: 176 1 2 3 4 5 6 7 8 9 10 11 12 13 1
- Page 181 and 182: 178 1 2 3 4 5 6 7 8 9 10 11 12 13 1
129<br />
1<br />
2<br />
3<br />
4<br />
5<br />
6<br />
7<br />
8<br />
9<br />
10<br />
11<br />
12<br />
13<br />
14<br />
15<br />
16<br />
17<br />
18<br />
19<br />
20<br />
21<br />
22<br />
23<br />
24<br />
off a lot of choices for some participation? My view is<br />
yes. Others might not and they can say no.<br />
MR. CAPRON: And how do they say no?<br />
MS. BARR: They say no by not agree<strong>in</strong>g to<br />
research or not agree<strong>in</strong>g to other research <strong>in</strong> the consent<br />
but at least that gets out to the public, which has a<br />
number of benefits. It allows <strong>in</strong>dividuals to participate.<br />
It raises our confidence <strong>in</strong> the research enterprise because<br />
a lot of people are participat<strong>in</strong>g and there is some<br />
exposure.<br />
Now the issue of fiduciary --<br />
MR. CAPRON: May I ask you --<br />
DR. MURRAY: Alex, I am go<strong>in</strong>g to have to --<br />
MR. CAPRON: Well, let me --<br />
DR. MURRAY: In the <strong>in</strong>terest of time, we have<br />
about 30 m<strong>in</strong>utes left for all of this morn<strong>in</strong>g's<br />
conversation, unless it is really urgent I am go<strong>in</strong>g to ask<br />
just to let Pat f<strong>in</strong>ish.<br />
MS. BARR: Okay. On the issue of fiduciary you<br />
have identified the traditional notion of what a fiduciary<br />
is and I am perfectly will<strong>in</strong>g to change the word but it<br />
seems to me that what we are talk<strong>in</strong>g about here is that the<br />
pathologist has to stand apart from his or her world as<br />
researcher and that they have no higher right to use the
Change language