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NHGRI to Fund More Ethics, Legal, Social Research Centers

By Matt Jones

NEW YORK (GenomeWeb News) – The National Human Genome Research Institute plans to fund new research centers that will use an array of cross-disciplinary approaches, from biology to legal analysis and a wide range in between, to explore the concerns and issues brought about by genomic medicine and research.

The institute plans to spend $2.8 million in 2013 to launch four new Centers of Excellence in Ethical, Legal and Social Implications Research (CEER), continuing a program that began in 2004 when it backed the creation of several similar centers at universities around the country.

These centers already have conducted research in a wide range of genomics-related issues in areas such as genetic testing, gene patenting, data privacy, and whole-genome sequencing, but the uptake and expansion of genomics and personalized medicine in the clinic and among consumers continues to present new issues, according to NHGRI. The institute labeled ELSI studies as a priority when it made them a central part of its four-pronged strategic plan, released in early 2011.

NHGRI wants the program to support centers that can conduct investigations of complex, persistent, or entirely new ELSI issues, to help build up and maintain the infrastructure at these centers that is required to continue such studies, and to train new investigators specializing in these research areas.

Joy Boyer, a program analyst at NHGRI's ELSI Research Program, told GenomeWeb Daily News on Friday that the program seeks to enable the creation of "transdisciplinary research teams that can use a wide spectrum of methodologies to conduct research on really critical issues in genetic and genomics research."

Researchers in these programs are encouraged to generate new ways to explore ethical, legal, and social questions and draft innovative studies that engage the full range of methodologies and disciplines.

"It really is a range of disciplines. We have researchers in behavioral research, clinical research, the humanities, a wide spectrum of the social sciences, and we have people doing health economic research and genomic and genetic scientists involved," said Boyer. "The hope is really that the centers can integrate and be closely aligned with genomic and genetic researchers, so that the issues they are addressing are really at the cutting edge, and are well informed by current developments in genomic research."

These transdisciplinary projects may include analytical studies, data-generating qualitative and quantitative research, and translational projects that use new conceptual tools and data to explore public policy options and inform guidelines for research or healthcare.

Boyer said there are a few core areas and groups of issues that NHGRI expects to emphasize in the ELSI projects including considerations about informed consent policies and policies regarding the return of study results.

The institute also aims to support research projects that study how genomic information is integrated into clinical settings, addressing questions such as how doctors handle a potentially huge amount of information, how they handle information that may be somewhat uncertain, and how they convey the information to patients. The research may also delve into how patients understand genomic information, and then what impact it may have on their health behaviors and their psychosocial health.

The grants will fund two types of centers. The Specialized CEERs will be funded with up to $750,000 per year for five years, and the Exploratory CEERs will receive up to $175,000 per year for three years to launch programs at institutes with fewer ELSI-related resources and which may require more infrastructural development.

NHGRI has previously funded CEERs at the University of Washington's Center for Genomics and Health Care Equality; Stanford University School of Medicine Center for Integration of Research on Genetics and Ethics; The Duke Center for the Study of Public Health Genomics; Case Western Reserve University Center for Genetic Research Ethics and Law; the Center for Genomics and Society at the University of North Carolina – Chapel Hill; the University of Pennsylvania Center for the Integration of Genetic Healthcare Technology; and exploratory CEERs at the Center for ELSI Research on Psychiatric, Neurologic, and Behavioral Genetics at Columbia University; the Center on Genomics and Social Identity in the African Diaspora at Howard University; and the Harvard/MGH Center for Genomics, Vulnerable Populations at Harvard University and Oregon Health Sciences University.

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