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Four U.S. Universities Get Millions for Ethics Research

By Michele Garfinkel

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The United States government will spend $20 million over the next five years to fund interdisciplinary research on the societal implications of advances in genomics and genetics.

The National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH) in Bethesda, Maryland, announced this week that four research centers had been selected to study the ethical, legal, and social implications of research in genetics and genomics.

The centers, located at Case Western Reserve University, Duke University, the University of Washington, and Stanford University, will focus on rapidly evolving problems that are emerging as genome projects are churning out genetic information.

The problems include the protection of human volunteers in research; the positive and negative impacts of commercialization; the conduct of controversial research, such as behavioral research; and ensuring that medically underserved populations reap the benefits of genomic research as readily as those with easy medical access.

All of the centers will help expand policy options, provide educational materials to the public, and assist researchers in understanding society’s concerns about their research programs.

The funding initiative, called the Centers for Excellence in Ethical, Legal and Social Implications (ELSI) Research, will fund four full-fledged centers as well as three individuals who are planning to explore the potential for future centers. The projects will presumably address issues that have not been adequately dealt with via the ELSI program that was established at the start of the publicly funded Human Genome Project in 1990.

The money comes primarily from the NHGRI. Additional contributions, totaling about $1 million, will come from the US Department of Energy and the National Institute of Child Health and Human Development, which is also part of NIH.

All of the funded Centers and exploratory programs are located at universities, and all of the universities have research programs in genomics. Although it is unclear from the initial descriptions what the range of collaborations will be, none of the recipients were non-academic organizations that are working on ethics issues.

The Center for Genetic Research Ethics and Law at Case Western Reserve University in Cleveland, Ohio, headed by Eric Juengst, will receive $5.3 million and will focus on protecting human participants in research. The center will first survey the existing research, regulations, and guidelines to determine how and whether these can address “emerging ethical concerns;” then the center will conduct its own research to contribute to improving policies and guidelines in human genetic research.

Duke University’s Center for the Study of Public Genomics in Durham, North Carolina, will be led by Robert Cook-Deegan and will receive $4.8 million to study the relationship between the “flow of information in genomics research” to the production of technologies and services for human health. This flow includes such things as publications, patents, and databases; and practices such as the sharing of research materials and intellectual property protections.

Wylie Burke is the principal investigator at the Center for Genomic Health Care and the Medically Underserved at the University of Washington in Seattle. Their $4.7 million grant will be used to translate findings from genetic and genomic research to the direct improvement of human health. Specifically, the Center will be concerned with reducing health disparities and assuring that “all segments of society” are involved in production of knowledge and in their ability to access these technologies.

Finally, California’s Stanford University will be the location of the Center for Integration of Research on Genetics and Ethics. Mildred Cho will head the $3.8 million effort to consider ELSI issues that emerge from research on behavioral and neurological conditions. The Center will focus on the possible consequences of such research (such as the potential for stigmatization), but will also provide practical guidance and consultation for researchers in the field.

In addition, Alexandra Shields at Georgetown University in Washington, D.C.; Charmaine Royal at Howard University in Washington, D.C.; and Donald Bailey at the University of North Carolina, Chapel Hill, have collectively been awarded a total of $1.7 million over three years for so-called “exploratory” grants. These investigators are concerned, respectively, with health disparities; the influence of community and cultural identity in attitudes about genomics and health; and how genetic information can be used and disclosed in studies with large samples (e.g., those using centralized DNA banking).

Exploratory grants allow researchers to plan new programs and to carry out feasibility studies in order to establish the requirements of a full-fledged center.

NHGRI Launches Centers for Excellence In Ethical, Legal and Social Implications Research

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