Entire Transcript in Adobe Acrobat Format - National Reference ...
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133 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 because there is information in registries. There is information in other documents. So researchers might contact you anyway for information and, therefore, a particular tissue banking enterprise to make the assumed promise that you would not be contacted. Although they could promise they would not contact you, it would be confusing and irritating. So we have another practical dilemma. My personal view is that, particularly if you are dealing with genetics, recontact about a study of genetics when you did not know your tissue was being used in a genetic study is an incredible invasion. I do not know how we put in place the appropriate protection. What I am telling you is my view, not a study view, and I think one of the things that is clear is that the whole area of study of what a response is and what is important is a study that is something that has to evolve and we need to be putting more resources into that. I do not think any representative patient group can really talk about what their constituency wants because you are generally listening to the most educated, the most -- you know, the strongest advocate speak and so we need other ways to do community consultation to get other points of view.
134 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 What are the concerns of those active? They are about discrimination. They are about being given information you did not want. The right to not know as well as the right to know. And we are very concerned that the community understand the difference between research and clinical practice and that there be an understanding that significant amounts of research must occur before things get to clinical practice. Now that is not a desperate position. There are people who are suffering from disease who feel a great deal of desperation and I am sure that if they were sitting in this room or if I were in their shoes I would have a different view about where the line is between information I should have access to versus not. So I do not want to pretend that my view is more appropriate. I just want to explain where it comes from. DR. LO: Could you just comment on barriers to a layered consent process from a woman's point of view? MS. BARR: I think if we have a consent process that is not the night before and if we have a consent process that will occur in the doctor's office either with a trained nurse or someone that the patient at this point is trusting, and I think trust is what is important, then I think patients will be able to handle layered informed
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- Page 165 and 166: 162 1 2 3 4 5 6 We will adjourn now
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What are the concerns of those active? They<br />
are about discrim<strong>in</strong>ation. They are about be<strong>in</strong>g given<br />
<strong>in</strong>formation you did not want. The right to not know as<br />
well as the right to know. And we are very concerned that<br />
the community understand the difference between research<br />
and cl<strong>in</strong>ical practice and that there be an understand<strong>in</strong>g<br />
that significant amounts of research must occur before<br />
th<strong>in</strong>gs get to cl<strong>in</strong>ical practice.<br />
Now that is not a desperate position. There<br />
are people who are suffer<strong>in</strong>g from disease who feel a great<br />
deal of desperation and I am sure that if they were sitt<strong>in</strong>g<br />
<strong>in</strong> this room or if I were <strong>in</strong> their shoes I would have a<br />
different view about where the l<strong>in</strong>e is between <strong>in</strong>formation<br />
I should have access to versus not. So I do not want to<br />
pretend that my view is more appropriate. I just want to<br />
expla<strong>in</strong> where it comes from.<br />
DR. LO: Could you just comment on barriers to<br />
a layered consent process from a woman's po<strong>in</strong>t of view?<br />
MS. BARR: I th<strong>in</strong>k if we have a consent process<br />
that is not the night before and if we have a consent<br />
process that will occur <strong>in</strong> the doctor's office either with<br />
a tra<strong>in</strong>ed nurse or someone that the patient at this po<strong>in</strong>t<br />
is trust<strong>in</strong>g, and I th<strong>in</strong>k trust is what is important, then I<br />
th<strong>in</strong>k patients will be able to handle layered <strong>in</strong>formed
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