Biobanks, governance, and informed consent and individual control - a view from the United States

Published on August 31, 2015   24 min
0:00
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.
0:24
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.
0:54
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.
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Biobanks, governance, and informed consent and individual control - a view from the United States

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