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

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studies and our clinical trials where blood samples are
being stored for biochemical analysis and how do we change
that into doing genetic analysis. How do we move this
forward.
So just to jump to the punch line, and how this
panel recommended, was that for ongoing incompleted studies
or retrospective studies on stored samples that the NHLBI
should encourage sharing anonymous or anonymized specimens
and we use the definitions from the American Society of
Human Genetics, anonymized -- anonymous means that they
were collected with no identifiers to start with.
Anonymous means that the identifiers have been cut and
cannot go back.
These samples should be shared in this fashion,
anonymous or anonymized, in studies where the study -- the
new study is broadly related to the consent that the
original participants signed. So, in other words, we have
large studies where we are looking at heart disease and so
somebody else who would like to use these samples to do
genetics of heart disease they could be shared in an
anonymous fashion.
Now if the new investigators decide that they
would like to use these samples but they would like to get
more information from the participant or they would like to