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ELLEN WRIGHT CLAYTON: Well, my
name is Ellen Wright Clayton.
And I'm really delighted to talk
with you today about biobanks,
governance, and informed consent.
I've been working on these
issues for many years
in the United States.
I am a faculty member at
Vanderbilt University,
where I co-founded the Center
for Biomedical Ethics in Society.
I'm also a general pediatrician
and a law professor.
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So the outline of my
talk today is that we
will first talk about the structure
and governance of biobanks.
We'll talk about where the data
and biospecimens come from.
We'll talk about who
the downstream users are
and how much control individuals
can and should have.
And then we'll close by talking
about the impact of the debate
about return of individual
research results
on how biobanks and biological
research goes forward.
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So what's in a biobank?
We tend to think about it just as
the biospecimens or the information
that's derived from them.
Typically, biospecimens are finite.
If you have a tissue sample
or a leftover blood sample,
there's only so much
of it to go around.
The exception of this, of course,
is for cell lines, where you actually
take a group of cells and
then you immortalize them
by transfecting them with a virus.
And we also have in biobanks
a variety of approaches
to genotyping, ranging from just
looking at variants in one or two genes,
to looking at various panels
for looking at genetic variation
to increasingly thinking
about whole exome
-that's the part of the genome that's
actually transcribed into protein-
to the whole genome
itself, which includes
all the regulatory elements
and the other things
that we're just
beginning to understand.
But the important thing to
recognize is that biobanks contain
a lot of other information as well.
And that's because
most genetic research
is actually devoted to
seeing how genetic variation
affects health and disease.
And so as a result,
we have to have a lot
of other information
about the individuals
whose biological
information we have.
And this includes not only
their health, but increasingly
can include information
about where they live,
their environmental exposures,
their behaviors, whether they smoke
or drink or exercise
or eat healthy food,
a variety of other information.
And this is really important
as you think about biobanks
and how they're organized,
and what the potential risks are
that attend these biobanks.
