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

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DR. HOLTZMAN: Just to maybe lay out a little
of the thinking here. This is not necessarily the
subcommittee's thinking. I think it is general thinking
about informed consent. Clearly if you can have it
reasonably happen you want to get it.
Then the question is why is informed consent
important? There may be two elements to that.
Simplistically the autonomy right of the individual as well
as the protection and the potential harms to the individual
and so then when you look at the extant samples, all right,
you then ask the question pragmatically the value to
society of doing research versus the cost and difficulty of
going back and getting the consent and that if you protect
them against harm by anonymization or conducting the study
in an anonymous manner, all right, that that protection
against harm plus the value to society outweighs the
autonomy interest. I mean, bottom line I think that is the
argument.
DR. DUMAS: I think you are getting to the
whole issue of who makes that decision.
DR. HOLTZMAN: All right.
DR. MURRAY: Dr. Susan Old has joined us.
Thank you for your patience and thank you very
much for taking some time this morning to come speak with