Entire Transcript in Adobe Acrobat Format - National Reference ...
Entire Transcript in Adobe Acrobat Format - National Reference ... Entire Transcript in Adobe Acrobat Format - National Reference ...
113 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 If you have a limited resource then you have to prioritize how it is used and there has to be conversation with communities of interest about how it is going to be used. The concept we were talking about earlier which is community collaboration or community consultation. Someone has got to do that and there have to be standards for how it will be done. It seems the likely place for that to happen is with the tissue because they get an overview of what is being requested, the timeliness of it and the amount of it. So we have suggested that an IRB affiliated with a tissue banking institution have -- appoint a panel that will do that kind of review. IRB's do not want to be responsible for that panel. When we asked them, "Well, if not you, who?" There was no answer. So I will say to you, "If not them, who?" But clearly that is a very important function in all this. It is a vital function in all this. What needs to be done? Just clear OPRR or NBAC guidelines. Just what I have talked about. Some standardization of documents so researchers do not get approval in one place, then go to the next place and have to change it and then go back to the first place because
114 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 they need consistency in their trial. If they know they are using tissue and we can simplify what has to be done so that they can use the tissue we will have facilitated research. That was our goal. And finally because we are looking at testing in a clinical setting we are doing some pilot testing with NCI of using this consent in the clinical setting. And what we have done with is it is an add on to the general surgical consent and we are doing some pilot testing and presenting it at different times, sometimes in the doctor's office and sometimes unfortunately the night before because that is when it really happens, and trying to get feedback. You should also know that we focused group the documents and as a result of that working with different ethnic communities we got a lot of very good feedback on how to change the documents and it was from that process that we did the informational brochure. (Slide.) A few more solutions. NCI is actually working with professional groups now regarding costs and storage guidelines. That is going to be a long process. NCI and DOD are talking about a national storage system. That is very preliminary. And then we are in a world where there is ongoing attention to informatics, questions of encoding
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113<br />
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If you have a limited resource then you have to<br />
prioritize how it is used and there has to be conversation<br />
with communities of <strong>in</strong>terest about how it is go<strong>in</strong>g to be<br />
used. The concept we were talk<strong>in</strong>g about earlier which is<br />
community collaboration or community consultation. Someone<br />
has got to do that and there have to be standards for how<br />
it will be done.<br />
It seems the likely place for that to happen is<br />
with the tissue because they get an overview of what is<br />
be<strong>in</strong>g requested, the timel<strong>in</strong>ess of it and the amount of it.<br />
So we have suggested that an IRB affiliated with a tissue<br />
bank<strong>in</strong>g <strong>in</strong>stitution have -- appo<strong>in</strong>t a panel that will do<br />
that k<strong>in</strong>d of review.<br />
IRB's do not want to be responsible for that<br />
panel. When we asked them, "Well, if not you, who?" There<br />
was no answer.<br />
So I will say to you, "If not them, who?"<br />
But clearly that is a very important function<br />
<strong>in</strong> all this. It is a vital function <strong>in</strong> all this.<br />
What needs to be done? Just clear OPRR or NBAC<br />
guidel<strong>in</strong>es. Just what I have talked about. Some<br />
standardization of documents so researchers do not get<br />
approval <strong>in</strong> one place, then go to the next place and have<br />
to change it and then go back to the first place because
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