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.
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.
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.
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.
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,
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.
The University of Pennsylvania Center for the Integration of Genetic Healthcare Technology (Penn CIGHT) is focused on the implications of the communication and use of potentially uncertain genetic information. Penn CIGHT develops tools that will help consumers, professionals, policy makers and insurers understand and cope with the certainty or uncertainty of results from genetic technologies.
This center conducts research on the ethical, legal and social factors that influence the translation of genetic information to improved human health. It is 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 is 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.
This center studies the interaction of genomic research with society, with an emphasis on the genomics of behavior. Its goals are 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.
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 contributes to the understanding of how information flow influences development, commercialization and use of genomic products and services that may benefit human health.
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.
Last Updated: January 9, 2017