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

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If, for example, I have -- in an extreme case I
have a series of fully identifiable tissue samples and I
send them on to another scientist with every piece of
identifying information stripped, there is nothing except
the raw tissue, and that is what the scientist works with.
It seemed odd to think about that as "identifiable" tissue.
That scientist would have absolutely no way of going back
and finding out from whom that tissue came so we came to a
model of thinking of the tissue as used.
It struck us that we accomplished the goals of
protecting individual privacy and protecting individuals
against potential discriminatory uses of genetic
information about them if we, in fact, endorse a process by
which a scientist could make a request for tissue, have the
tissue sent with perhaps some information but not enough --
not sufficient information to identify the individual from
whom the tissue came and to say that in that sense the
tissue was being used in an anonymous manner.
There is, what Zeke has labeled, an encryption
barrier that is better than the metaphor of a fire wall.
It is an encryption barrier which involves the stripping of
a considerable amount of information. It might contain
such things still as a medical history or at least the
relevant points for the disease in question. It might