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73 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 future studies to provide the widest opportunity of use of these samples for the public good and furthering public health. So with the progress of the Human Genome Project, both in terms of some of the resources it is developing and some of the analytical tools it is developing, our population studies and our clinical studies, the samples from these studies are becoming increasingly valuable and very highly sought after. So one of our goals was to -- how do we take the biggest advantage of these samples. What are the opportunities out there for using these samples and what are the obstacles to using these samples that NHLBI has stored along with also how do we do future research? So the NHLBI convened a special emphasis panel called the "Opportunities and Obstacles to Genetic Research in NHLBI Clinical Studies." This panel consisted of a large number of individuals involved in various aspects of research and you can see the roster in the back. It covers all the participants -- all the various interest groups involved in collecting samples and using samples. The guiding principles of this panel were provide the NHLBI with feasible, implementable, recommendations to supporting genetic research in these
74 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 samples, to take into consideration all the various aspects involved in using these samples. In other words, the various interest groups, the participants in studies, the investigators that collect the samples, and the public good. And then also the goal -- one of the goals was to use a carrot not a stick to help people share these resources. It says right here in the overview one of the key issues is how can NHLBI's valuable data and sample collection be made available to the broadest scientific community while maintaining the privacy and the trust of the study participant and what barriers exist, either funding, samples, control, and how can they be overcome. So this committee identified four key areas on how to make samples widely available to the community, disseminating information, getting information out there on an NHLBI studies, what studies do we have available that people could use samples from, how do we ensure that there are adequate DNA resources, in other words establishing immortalization and repository services to use these samples, facilitating collaborations and putting in all small grants to share resources, to further pilot studies, to get collaborations set up, and also protecting human subjects, and that is what I am going to be addressing
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future studies to provide the widest opportunity of use of<br />
these samples for the public good and further<strong>in</strong>g public<br />
health.<br />
So with the progress of the Human Genome<br />
Project, both <strong>in</strong> terms of some of the resources it is<br />
develop<strong>in</strong>g and some of the analytical tools it is<br />
develop<strong>in</strong>g, our population studies and our cl<strong>in</strong>ical<br />
studies, the samples from these studies are becom<strong>in</strong>g<br />
<strong>in</strong>creas<strong>in</strong>gly valuable and very highly sought after.<br />
So one of our goals was to -- how do we take<br />
the biggest advantage of these samples. What are the<br />
opportunities out there for us<strong>in</strong>g these samples and what<br />
are the obstacles to us<strong>in</strong>g these samples that NHLBI has<br />
stored along with also how do we do future research?<br />
So the NHLBI convened a special emphasis panel<br />
called the "Opportunities and Obstacles to Genetic Research<br />
<strong>in</strong> NHLBI Cl<strong>in</strong>ical Studies." This panel consisted of a<br />
large number of <strong>in</strong>dividuals <strong>in</strong>volved <strong>in</strong> various aspects of<br />
research and you can see the roster <strong>in</strong> the back. It covers<br />
all the participants -- all the various <strong>in</strong>terest groups<br />
<strong>in</strong>volved <strong>in</strong> collect<strong>in</strong>g samples and us<strong>in</strong>g samples.<br />
The guid<strong>in</strong>g pr<strong>in</strong>ciples of this panel were<br />
provide the NHLBI with feasible, implementable,<br />
recommendations to support<strong>in</strong>g genetic research <strong>in</strong> these