NHGRI Launches Centers for Excellence
In Ethical, Legal and Social Implications Research
Four Sites Selected to Pioneer Interdisciplinary Initiative
Bethesda, Maryland The National Human Genome Research
Institute (NHGRI), part of the National Institutes of Health (NIH),
announced today the funding of four interdisciplinary centers as
part of a new initiative to address some of the most pressing ethical,
legal and social questions raised by recent advances in genetic
and genomic research.
The initiative, the Centers for Excellence in Ethical, Legal and
Social Implications Research, is being led by NHGRI, with significant
contributions from the U.S. Department of Energy (DOE) and the National
Institute of Child Health and Human Development (NICHD). About $20
million in grants will be awarded over the next five years with
DOE contributing $500,000 and NICHD, $450,000. The first four Centers
are being established at Case Western Reserve University, Cleveland;
Duke University, Durham, N.C.; Stanford University, Palo Alto, Calif.;
and the University of Washington, Seattle.
“The NHGRI’s pioneering program supporting research
in the ethical, legal and social implications of genomic knowledge
provides the basis for this exciting new initiative,” said
NHGRI Director Francis S. Collins, M.D., Ph.D. “We will now
build upon this foundation by establishing interdisciplinary research
centers that can take an even more dynamic and broad-based approach
to identifying and addressing some of the most pressing issues facing
individuals, families and communities in the genome era.”
Each of the new centers will assemble a team of experts in several
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
of genomic research, including the scientific goals and challenges
identified by NHGRI in “A Vision for the Future of Genomics
Research,” which was published in April 2003 in the journal
Nature. 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 on the ethical, legal and social implications of genomic
research. Special efforts will be made to recruit potential researchers
from under-represented groups.
Elizabeth Thomson, M.S., R.N., of NHGRI’s Ethical, Legal
and Social Implications (ELSI) Research Program, said, “The
breadth and depth of knowledge and skills that these centers have
pulled together is impressive. These centers truly are excellent
in every sense of the word. We look forward to the many ways in
which their research and other activities will serve to shape discussions
and inform future policy decisions related to genetics and genomics.”
"Providing funding assistance, in concert with the NHGRI,
to two of these centers (Duke and Stanford) reflects the importance
that we continue to place on ethical, legal and social implication
activities, especially issues of commercialization and of genetic
contributions to complex characteristics," said Aristides Patrinos,
Ph.D., associate director of DOE's Office of Biological and Environmental
Research in the Office of Science.
The new Centers for Excellence in ELSI Research, their principal
investigators and their total funding levels over five years are:
- Case Western Reserve University’s Center for Genetic Research
Ethics and Law
Eric Juengst, Ph.D., $5.3 million
This center will study the ethical issues in the design and
conduct of human genetic research, including issues regarding
the protection of human subjects in research. After first surveying
existing ethical, legal and social implications research, and
current genetic research regulations and guidelines to determine
how adequately they address present and emerging ethical concerns,
the center will conduct research and develop resources that
will contribute to stronger policies and guidelines in genetic
research.
- The Duke Center for the Study of Public Genomics
Robert Cook-Deegan, M.D., $4.8 million
This center will assemble a team to gather and analyze information
about the role of publication, data and materials sharing, patenting,
database protection and other practices that may affect the
flow of information in genomics research. Research pertaining
to these topics will make a much-needed contribution to the
understanding of how information flow influences development,
commercialization and use of genomic products and services that
may benefit human health.
- Stanford University School of Medicine’s Center for Integration
of Research on Genetics and Ethics, Mildred Cho, Ph.D., $3.8
million
This center will focus on the ethical, legal and social consequences
of uncovering the genomic contributions that may contribute
to behavioral and neurological conditions. Research that examines
attributes and traits that are possibly found more frequently
in certain populations has the potential to stigmatize both
individuals and groups. The Stanford center will work to identify
and understand the issues related to this genetic research,
provide consultation and guidance to genetic researchers on
these issues, and develop training and education materials that
can be integrated into the design and implementation of neurological
and behavioral genetic studies.
- University of Washington’s Center for Genomic Health
Care and the Medically Underserved
Wylie Burke, M.D., Ph.D., $4.7 million
This center will conduct research on the ethical, legal and
social factors that influence the translation of genetic information
to improved human health. It will be dedicated to addressing
two overarching themes resulting from the clinical integration
of genomics: the need to define criteria for clinical integration
that lead to clinically and socially appropriate applications
of genomic health care, and the need for a translational pathway
that incorporates the goal of reducing health and health care
disparities among the medically underserved. A major outcome
will be the development of methods to inform all segments of
society about technological advances, and to improve the mechanisms
for obtaining input from diverse populations to help to identify
and assess policy options for addressing these challenges.
In addition to funding these four centers of excellence, NHGRI
announced the award of three exploratory grants that provide two
to three years of support to investigators for planning and developing
potential new centers at their institutions. Exploratory grants
were awarded to:
- Alexandra Shields, Ph.D., Georgetown University, Washington,
$560,000 over three years. Dr. Shields plans to develop a center
dedicated to examining the intersection of genetics, vulnerable
populations and health disparities in tobacco dependence, asthma
and diabetes.
- Charmaine Royal, Ph.D., Howard University, Washington,
$700,000 over three years. Dr. Royal plans to develop a center to
analyze social and cultural identities of individuals and communities
of African descent and how those identities influence attitudes
about genomics and health care as well as health behaviors.
- Donald Bailey, Ph.D., University of North Carolina at Chapel
Hill. $430,000 over two years. Dr. Bailey will plan a center to
examine how information from large-sample genetic studies is used
and disclosed in biomedical research. During the exploratory phase,
the researchers will focus on issues related to newborn screening,
adolescent health research and centralized DNA banking.
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.
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.
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