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

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three-part distinction, actually four-part distinction:
There was samples which are anonymous, Guthrie Cards;
samples which could be made anonymized or anonymizable
samples; samples which are potentially identifiable; and
samples which are going to be used in an identified manner.
We have not found that distinction helpful
because when one thinks through or when the subcommittee
thought through the kinds of recommendations we would make
under those categories, in fact, they collapsed into these.
We thought one of the problems of the current debate was
the fact that everyone was focused in on how the samples
are stored rather than how they are going to be used
because the key issue is not whether your sample is in a
research study but linking the result with the name. That
turned out to be the key potential where harm can occur.
So the key issue is are you using the sample in an
anonymous manner in this research study?
Then we made some distinctions here, which we
have subsequently collapsed, and I am going to talk about
that in the next frame, which is there are samples which we
have collected. In the past this has been true where you
are looking at individual samples, there is no community
link, there is no link even in an anonymous fashion, you
are just say looking randomly for colon cancer genes not in