Gail Henderson, professor of social medicine and director of the Center for Genomics and Society at the University of North Carolina at Chapel Hill, has been confirmed for a four-year term as a member of the National Advisory Council for Human Genome Research, and asked to speak at the 19th Bangkok International Symposium on HIV Medicine.
“Serving on the Advisory Council is a distinct honor,” said Henderson.
In her new role, Henderson will work with other council members on advising the U.S. Department of Health and Human Services, the National Institutes of Health (NIH) and National Human Genome Research Institute (NHGRI) about genetics, genomic research, training and programs related to the human genome initiative.
Since 1990, the National Human Genome Research Institute has supported research on ethical, legal and social implications (ELSI) of genomics, and UNC has become a major center for this work. For Henderson, this began in 1999 with funding to study how researchers and study participants understood the possibilities of new, cutting-edge genetic technology—in gene therapy trials. Since then, UNC investigators from the Schools of Medicine, Public Health, Nursing, Law and the College of Arts and Sciences have pursued ELSI issues in genomics as investigator-initiated grants and larger consortia. More than a decade ago, the Center for Genomics and Society at UNC was funded to support research and training on ELSI issues now and in the future.
Henderson has served as director and principal investigator of the interdisciplinary Center for Genomics and Society at UNC since 2007. In 2013, the Center was renewed for another five years, to conduct “GeneScreen” – a study of the harms and benefits of screening asymptomatic adults for rare, medically actionable mutations.
Research Focuses on Study Volunteer Behavior
In mid-January, Henderson will travel to Thailand to present during the 19th Bangkok International Symposium on HIV Medicine. Her talk is titled “Why Do People Join or Decline HIV Cure Research?” The talk is based on data from a recently awarded, four-year R01 from the National Institute of Allergy and Infectious Disease (NIAID) that explores decision making for HIV remission trials taking place in Bangkok.
This award is part of a special NIAID Program Announcement for research on ethical and social issues in HIV research. In this work, colleagues at UNC, RTI, the U.S. Military HIV Research Program/Henry Jackson Foundation and the Thai Red Cross AIDS Research Centre are collaborating on a longitudinal study of HIV remission trial joiners and decliners.
“We are collecting empirical data on how people in actual, ongoing HIV remission trials come to these decisions and why,” Henderson said.