Centers of Excellence in ELSI Research (CEER)
The CEER bring investigators from multiple disciplines together to work in innovative ways to address important new, or particularly persistent, ethical, legal, and social issues related to advances in genomics. In addition, the centers will support the growth of the next generation of researchers on the ethical, legal and social implications of genomic research.
The NHGRI Ethical, Legal and Social Implications (ELSI) Research Program has funded research grants from investigators in a wide range of disciplines. Many of these projects have used interdisciplinary approaches to investigate ELSI questions. As the pace of genomic and genetic research increases, the development of research teams that have the expertise and flexibility to respond rapidly to the large number of emerging and evolving ELSI issues is critical. All of these factors contribute to a need for new and more innovative approaches, including new organizational structures and funding mechanisms. The creation of research centers with the resources and expertise to design and implement multi-faceted and multi-disciplinary investigations of particularly complex, persistent or rapidly emerging ELSI issues is an important addition to ongoing genetic, genomic and ELSI research efforts.
A Center should:
- Develop and operate with a highly effective management strategy.
- Promote intensive and sustainable interactions among investigators from different disciplines, such as genomic sciences, clinical research, clinical and health policy, ethics, law, the humanities, economics, political science, anthropology and other basic social sciences.
- Be highly innovative and develop new concepts, methods, analyses, or ways to consider ELSI issues that will substantially advance the state of the art in ELSI.
- Propose potentially significant advances to address a well-defined critical top area in ELSI research.
- Propose research that cannot reasonably be addressed by a standard R01 research grant (as the Center's primary research activities continue, additional funding may be sought through the ELSI research project (R01), small research (R03), and exploratory research (R21) grant programs to support other related research).
- Add value beyond the genomics and ELSI research studies that are already ongoing at the applicant institution.
- Include a strategy for the timely dissemination of the results of the Center's ongoing activities to key stakeholders (including policy options as appropriate), and
- Increase the pool of ELSI researchers, by offering innovative, substantive educational and career advancement opportunities across multiple disciplines and across the career pipeline, including integrating the development of new investigators and broadening the mentoring of established investigators - See more at: http://grants.nih.gov/grants/guide/rfa-files/RFA-HG-15-021.html#sthash.rnloevfg.dpuf
A Center should not:
- Simply continue a research track already being pursued by an institutional or an inter-institutional research team.
- Serve as the obvious next step in a project or field of inquiry, which could be accomplished by assembling a sizeable research team and budget of a typical R01.
- Be a collection of individual R01s or a program project, or
- Provide infrastructure for an existing Program, Division, or Department - See more at http://grants.nih.gov/grants/guide/rfa-files/RFA-HG-15-021.html#sthash.rnloevfg.dpuf
Utah Center of Excellence in Ethical, Legal and Social Implications Research
Jeff Botkin, M.D., M.P.H, $3.9 million(FY 2016-2019)
This center is expanding on research on prenatal testing already supported by NHGRI. It is dedicated to studying how family members communicate about prenatal and newborn screening, including how test results and risks are communicated, decision-making and couples communication.
Genetic Privacy and Identity in Community Settings
Ellen Wright Clayton, M.D., J.D., $4 million (FY 2016-2019)
This center is studying privacy risks associated with genomic information, examining factors that influence how people perceive such risks. The researchers are examining the effectiveness of legal and policy efforts to reduce privacy risks, and studying the likelihood that lapses in protecting genomic information allow people to be identified. They are working to develop policies to prevent the loss of privacy that could lead to the use of personal genomic information for unintended purposes, such as to discriminate in decisions about employment and insurance.
Ethical, Legal and Social Issues for Precision Medicine and Infectious Disease
Gail Geller, Sc.D., $4 million (FY 2016-2019)
This center examines the ethical implications of using genomic information to help manage the prevention, control and treatment of infectious diseases. The researchers are developing and conducting three pilot projects that study how genomic information affects infectious disease research, public health policy and clinical practice. The work builds on previous NHGRI-supported research.
Center for the Ethics of Indigenous Genomic Research (CEIGR)
Paul Spicer, Ph.D., $3.6 million (FY 2016-2019)
This center examines how the use of genomic information in medical care could potentially impact American Indian and Alaska Native communities and health care systems. The university partners with the Chickasaw and Lakota Sioux tribes and communities and the Southcentral Foundation in Anchorage, Alaska, to study awareness, knowledge and attitudes about genomics in these communities. The collaboration aims to help create culturally appropriate research and education programs, as well as tools to develop similar programs in other communities.
Center for ELSI of Psychiatric, Neurologic & Behavioral Genetics at Columbia University Medical Center
Paul Appelbaum, M.D., $5.2 million (FY 2013-2017)
The Center for ELSI of Psychiatric, Neurologic & Behavioral Genetics at Columbia University Medical Center is a scale-up of the Columbia University Exploratory Center Grant (see below). This CEER is exploring the impact of Psychiatric, Neurologic & Behavioral genetic information at individual, familiar and societal levels, considering its effects on stigma and self-image,
Center for Genomics and Society at University of North Carolina-Chapel Hill
Gail Henderson, Ph.D., $12.2 million (FY 2007-2017)
The Center for Genomics and Society is a scale-up of the University of North Carolina Exploratory Center Grant (PI: Donald Bailey). This CEER, which was competitively renewed in 2013, is conducting an integrated set of research, policy, and education activities focused on new or heightened ELSI issues resulting from large-scale gene discovery and disclosure projects, and developing policy-relevant recommendations that will address translation to practice.
University of Pennsylvania Center for the Integration of Genetic Healthcare Technology (Penn CIGHT)
Reed Pyeritz, M.D., Ph.D., $ 5.3 million (FY 2007-2013)
The University of Pennsylvania Center for the Integration of Genetic Healthcare Technology (Penn CIGHT) was focused on the implications of the communication and use of potentially uncertain genetic information. Penn CIGHT developed tools to help consumers, professionals, policy makers and insurers understand and cope with the certainty or uncertainty of results from genetic technologies.
University of Washington Center for Genomics and Health Care Equality
Wylie Burke, M.D., Ph.D., $9.5 million (FY 2004-2014)
This center conducted research on the ethical, legal and social factors that influence the translation of genetic information to improved human health. It was 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. The center's goal was to develop 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.
Stanford University School of Medicine Center for Integration of Research on Genetics and Ethics
Mildred Cho, Ph.D., $9 million (FY 2004-2014)
This center studied the interaction of genomic research with society, with an emphasis on the genomics of behavior. Its goals were to 1) to enhance the incorporation of ethical and societal considerations into the practice of genomic research on behavior through identifying the issues raised by such research; 2) to conduct scholarly studies that inform the ethical practice of research; and 3) to develop mechanisms that enhance the incorporation of ELSI considerations into research.
The Duke Center for the Study of Public Genomics
Robert Cook-Deegan, M.D., $9.3 million (FY 2004-2014)
This center assembled 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 contributed to the understanding of how information flow influences development, commercialization and use of genomic products and services that may benefit human health.
Case Western Reserve University Center for Genetic Research Ethics and Law (CGREAL)
Patricia Marshall Ph.D. and Richard Sharp, Ph.D. (formerly Eric Juengst, Ph.D.), $8.2 million (FY 2004-2013)
This center studied 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 conducted research and developed resources that will contribute to stronger policies and guidelines in genetic research.
Kaiser Permanente Division of Research and University of California, San Francisco
Center for Transdisciplinary ELSI Research in Translational Genomics
Barbara Koenig, Ph.D. and Carole Somkin, Ph.D., $778,000 (FY 2013-2016).
This exploratory center will utilize Kaiser's Research Program on Genes, Environment, and Health to address key ELSI questions in translational genomic research.
Center for ELSI Research on Psychiatric, Neurologic and Behavioral Genetics
Paul Appelbaum, M.D., Columbia University, New York, $690,000 over three years (FY 2010-2013).
This exploratory center is focused on ELSI Research on Psychiatric, Neurologic and Behavioral (PNB) Genetics to facilitate better understanding and application of information coming from research on the genetics of PNB phenotypes.
Oregon Health Sciences University (OHSU)
Interdisciplinary Center on Epigenetics, Science & Society
Nancy Press, Ph.D., OHSU, Portland, $710,000 over three years (FY 2010-2013).
This exploratory center is focused on the exploration of ELSI issues that may develop as our scientific understanding of epigenetics is advanced.
Harvard/MGH Center for Genomics, Vulnerable Populations and Health Disparities
Alexandra Shields, Ph.D., Harvard University, Boston, $560,000 over three years (FY 2004-2007).
This exploratory center focused on the intersection of genetics, vulnerable populations and health disparities in tobacco dependence, asthma and diabetes.
Center on Genomics and Social Identity in the African Diaspora
Charmaine Royal, Ph.D., Howard University, Washington, $700,000 over three years. (FY 2004-2007)
This exploratory center focused on the 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.