|NHGRI Funds Assessment of Public Attitudes About
Population-Based Studies on Genes and Environment
Project Will Include Town Hall Meetings in Five States
BETHESDA, Md. – The National Human Genome Research Institute (NHGRI),
part of the National Institutes of Health (NIH), today announced
it has awarded $2 million to the Genetics and Public Policy Center
of the Berman Bioethics Institute at Johns Hopkins University to
conduct a public discussion about future potential large U.S. population-based
studies examining the roles of genes and environment in human health.
“Data from the Human Genome Project, a better understanding of
human genetic variation, and major advances in genetic and environmental
technologies have provided an unprecedented opportunity to begin
contemplating how large, population-based studies might be designed.
Such research could help unravel the complex genetic and environmental
factors that contribute to common diseases such as cancer and heart
disease,” said NHGRI Director Francis S. Collins, M.D., Ph.D. “However,
before we even think of moving forward with such a major national
enterprise, it is imperative that we begin a dialogue with the
American public. This grant opens the door to that discussion.”
In 2005, NHGRI, in collaboration with other NIH institutes, commissioned
a group of experts in genetics, epidemiology, biostatistics, and
ethical, legal, and social issues to examine the scientific rationale
and the logistical and technical challenges of a large, population-based
study of genes, environment and health in the United States. Such
studies are already underway in several other countries. Although
funding for such an endeavor has not been identified, carefully
outlining and considering the goals and key design aspects of such
studies was deemed of high scientific importance.
A large, population-based study likely would involve the participation
of hundreds of thousands of U.S. volunteers, who would be followed
for a period of many years to ascertain and quantify the major
environmental and genetic contributors to common illnesses. Researchers
would analyze genetic risk factors; environmental exposures, such
as smoking and dietary intake; and the health-care experiences
of a wide cross-section of people in the United States. The study
would also provide the opportunity to dissect some of the causes
of health disparities between different groups, a topic of much
In October 2005, the Department of Health and Human Services Secretary’s
Advisory Committee on Genetics, Health, and Society held a day-long
discussion about the potential of large, population-based studies.
The group concluded that broad-based public engagement will be
essential in designing and implementing such studies, recommending
that efforts begin to assess public attitudes toward this area
“It is important that researchers begin working with the U.S.
public now so that, in the event these projects are launched, public
input and concerns about issues like patient privacy and informed
consent can be incorporated into the design and implementation
of such studies,” said Jean McEwen, JD, Ph.D., a program director
of NHGRI’s Ethical, Legal, and Social Implications Branch.
As part of its two-year, $2 million pilot project, the Washington,
D.C.-based Genetics and Public Policy Center will obtain input
on issues related to large, population-based studies through a
series of focus groups in Jackson, Miss.; Kansas City, Mo.; Middletown
and Philadelphia, Pa; Phoenix, Ariz.; and Portland, Oregon. In
addition to the focus groups, the center plans to carry out a national
web-based survey of 4,000 individuals and will conduct town hall
meetings attended by 1,000 people in the five states. Community
leaders will be interviewed as well. The grant will also be used
to develop educational materials for the participants, providing
them with information about large, population-based studies for
the focus groups, survey, and town hall meetings.
When, or if, large, population-based studies are launched in the
future, the information gathered by the pilot project on public
attitudes will be used to develop larger and more targeted forms
of community engagement, directed at specific communities from
which any potential participants are recruited.
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.