Entire Transcript in Adobe Acrobat Format - National Reference ...

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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.