NHGRI Funds New Centers for Excellence in Ethical,
Legal and Social Implications Research
Centers Established in North Carolina and Pennsylvania to Focus
on Genomic Research
The National Human Genome Research Institute (NHGRI), part of
the National Institutes of Health (NIH), today announced the establishment
of two new centers to address the most critical ethical, legal
and social questions faced by researchers and patients involved
in genetic and genomic research.
Over the next five years, grants totaling more than $12 million
will be awarded as part of the Centers for Excellence in Ethical,
Legal and Social Implications Research initiative, launched by
NHGRI in 2004. The new centers are being established at the University
of North Carolina-Chapel Hill and the University of Pennsylvania
in Philadelphia.
"Examining the emerging ethical, legal and social implications
of genomic research is central to our goal of safely and effectively
moving discoveries into the clinic," said NHGRI Director Francis
S. Collins, M.D., Ph.D. "These centers will work to identify
and address the most pressing issues being confronted by individuals,
families and communities as a result of genetic and genomic research."
Each of the new centers will pull together a team of experts representing
a broad range of disciplines, such as bioethics, law, behavioral
and social sciences, clinical research, theology, public policy,
and genetic and genomic research. The interdisciplinary nature
of these teams will allow the centers to develop innovative research
approaches focused on specific sets of issues that relate to the
numerous applications and uses of genomic research, technologies,
and information.
The centers' output will be critical in formulating and implementing
effective and equitable health and social policies related to genomic
research. In addition, the centers will create new environments
to support the growth of the next generation of researchers interested
in exploring the ethical, legal and social implications of genomics.
Special efforts will be made to recruit potential researchers from
under-represented groups.
"As genomic research begins to touch more of us in our daily
lives, it is essential that rigorous studies are undertaken to
ensure that ethical, legal and social issues stemming from genetics
and genomics are taken into consideration in the development and
implementation of policies," said Elizabeth Thomson, D.N.Sc..,
R.N., of NHGRI's Ethical, Legal and Social Implications (ELSI)
Research Program. "The centers' research and other activities
will provide an important knowledge base from which to begin tackling
these issues."
The new Centers for Excellence in ELSI Research, their principal
investigators and their approximate total funding levels over five
years are:
- University of North Carolina-Chapel Hill's Center for
Genomics and Society
Gail Henderson, Ph.D., $5.6 million
Genetic and genomic research has traditionally focused on small
groups of people with relatively rare diseases. But cheaper and
more efficient technologies are making it feasible to launch efforts
involving thousands of individuals, many of which are aimed at
uncovering gene variants involved in common diseases. The Center
for Genomics and Society will assemble an interdisciplinary team
to conduct research focusing on the ethical, legal and social issues
unique to large-scale genomics.
Specifically, the center's team will examine the impacts of discoveries
from large-scale genomic research for individuals, families and
populations, with a particular focus on studies with implications
for specific racial, ethnic or other socially defined groups. In
addition, the center will look at the effect of large-scale genomic
research on informed consent, the regulation and use of DNA samples,
and the control and dissemination of large and complex data sets.
The center will also offer a research consultation service to genomic
researchers. The research conducted at the center will contribute
to the translation of genomic research findings into clinical or
public health practice.
- University of Pennsylvania's Penn Center for ELSI Research
Reed Pyeritz, M.D., Ph.D., $5.4 million
This center will concentrate on the ethical, legal, and social
factors associated with genetic technologies, such as genetic testing,
with the potential to generate uncertainty and confusion among
patients, relatives, doctors and health insurers. The overall goal
of the Penn Center for ELSI Research is to develop tools that will
help consumers, professionals, policy makers and insurers understand
and cope with the certainty or uncertainty of results from genetic
technologies.
Team members will conduct original research to explore issues
related to uncertainty, including an historical analysis of the
ethical, legal, and social consequences of prenatal testing; an
assessment of patient and provider perceptions of the barriers
and utility of using a preventive genetic test to identify the
likelihood of future disease susceptibility; and an evaluation
of the long-term psychological, social, and medical effects of
genetic testing and counseling for breast cancer on African American
women and their families.
NHGRI's ELSI Research Program was established in 1990 as an integral
part of the Human Genome Project to foster basic and applied research
and to support education and outreach activities. The program,
which is part of NHGRI's Division of Extramural Research, funds
and manages studies related to the ethical, legal and social implications
of genetic and genomic research, and also supports workshops, research
consortia and policy conferences related to such topics. The ELSI
Research Program is the largest sponsor of research on the ethical,
legal and social aspects of biomedicine in the world. A list and
summary of other Centers of Excellence in ELSI Research is available
at http://www.genome.gov/25522195.
NHGRI is one of the 27 institutes and centers at NIH, an agency
of the Department of Health and Human Services. For more information
about NHGRI's ELSI Research Program, see www.genome.gov/10001618.
For more information about NHGRI, see www.genome.gov.
The National Institutes of Health (NIH) — The Nation's
Medical Research Agency — includes 27 Institutes and
Centers and is a component of the U.S. Department of Health and
Human Services. It is the primary federal agency for conducting
and supporting basic, clinical and translational medical research,
and it investigates the causes, treatments, and cures for both
common and rare diseases. For more information about NIH and
its programs, visit www.nih.gov.
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