Sociologist to Head Genome Center for Ethical, Legal, and Social Implications Research
In October, the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH), announced the establishment of two new research centers to address the most critical ethical, legal, and social implications (ELSI) faced by researchers and patients involved in genetic and genomic research. The new centers are being established at the University of North Carolina-Chapel Hill and the University of Pennsylvania-Philadelphia, adding to the four already established centers. Sociologist Gail Henderson, in the University of North Carolina’s School of Medicine, will be the Principal Investigator (PI) at the University’s Center, which will be housed in the Carolina Center for Genome Sciences.
Of the PIs at the six Centers in the United States (i.e., Stanford University, Case Western University, University of Washington-Seattle, Duke University, University of Pennsylvania, and University of North Carolina-Chapel Hill) Henderson is the only sociologist; (other PIs are MDs, natural science PhDs, and a philosopher). Henderson has been working on ELSI projects since the late 1990s, as have the 18 co-investigators on the Center grant, many of whom have also been funded by the NHGRI program in the past. The group received a five-year $5.9-million Center grant.
A medical sociologist with training in public health, Henderson has teaching and research interests in research ethics and global health. In 1999, Henderson co-edited a research ethics casebook, Beyond Regulations: Ethics in Human Subjects Research. Since then she has been awarded a number of NIH grants on research ethics, including several that focus on the ethical, legal, and social issues arising in genetic research.
Following on the success of the group’s planning grant awarded three years ago, this new proposal expands the scope of research, training, and outreach projects examining the ELSI issues surrounding large-scale gene discovery and disclosure brought about by modern genomics research. The three major aims of the proposal are:
- To implement transdisciplinary studies to help ensure that genomic advances result in maximum benefit and minimal harm to individuals, families, groups, and society.
- To develop a set of mechanisms to inform genomic research, research policy, and public policy.
- To train a core group of graduate students, post-doctoral fellows, and young investigators from a variety of disciplines working on research, consultation and policy initiatives.
For more information on the University of North Carolina-Chapel Hill Center, visit the Center for Genomics and Society website at genomics.unc.edu/genomicsandsociety/ index.html.
NHGRI’s ELSI Research Program was
established in 1990 as an integral part
of the Human Genome Project to foster
basic and applied research and to support
education and outreach activities. The
program, part of NHGRI’s Division of
Extramural Research, funds and manages
studies related to the ethical, legal, and
social implications of genetic and genomic
research. The ELSI Research Program is
the largest sponsor of such research in
the world. For more information about
NHGRI’s ELSI Research Program, see
www.genome.gov/10001618. For more
information about NHGRI, see www.genome.gov. 
