Panel Discusses Ethical Concerns in Genetic Research

The event kicked off with a public screening of “The Immortal Life of Henrietta Lacks,” a 2017 film that shares the history of arguably the most important woman in biomedical research.

Lacks’ cancer cells were taken without her permission in 1951 and were used in research that led to hundreds of medical discoveries, including the development of the polio vaccine.

The film explores the ethics surrounding research consent, privacy and the ownership of DNA.

After the film, a panel of experts discussed ethical concerns relating to genetic research, including studies being conducted in Buffalo.

“We had a diverse panel of university researchers, people who review and approve studies and, most importantly, members of the community,” said Laurene M. Tumiel-Berhalter, PhD, director of the Community Engagement core in the UB Clinical and Translational Science Institute (CTSI) and associate professor of family medicine.

“They know there is a certain amount of distrust surrounding clinical studies within the community and that those fears are grounded in real, historical facts that we, as researchers, cannot ignore,” she added. “This event provided the perfect platform for airing those concerns.”

The event was held in honor of the National Institutes of Health’s 15th National DNA Day, a celebration of the anniversary of the completion of the Human Genome Project, the world’s largest collaborative research effort, which successfully identified and mapped all of the genes in human DNA.

Sponsors included the UB Community of Excellence in Genome, Environment and Microbiome (GEM); the CTSI; the Mini-Medical School in the Jacobs School; and the Patient Voices Network.

“UB GEM was thrilled to collaborate with university partners and with our community, especially surrounding the Buffalo Niagara Medical Campus, to offer this unique event,” said Jennifer A. Surtees, PhD, GEM co-director and associate professor of biochemistry.

“This was a chance to learn firsthand how biomedical research is done in 2018, as well as what genomic and genetic research is happening right here at UB.”

Moderators of the panel discussion included:

• Timothy F. Murphy, MD, senior associate dean for clinical and translational research, CTSI director, GEM executive director and SUNY Distinguished Professor of medicine
• Kinzer Pointer, pastor of Agape Fellowship Baptist Church and chairperson of both the Erie County Poverty Committee in the Erie County Department of Social Services and the board of managers of Millennium Collaborative Care

Panelists included:

• Teresa Edgerton, DNP, nursing instructor at Trocaire College, where she has conducted patient recruitment for clinical trials and teaches courses on professional ethics
• Michael D. Garrick, PhD, professor of biochemistry, who completed his postdoctoral work at Johns Hopkins University under one of the scientists involved with Lacks
• Kyle Mann, Institutional Review Board administrator in the UB Office of Research Compliance, who ensures that UB research is ethical and monitors studies to protect the welfare and rights of participants
• Veronica Meadows-Ray, community consultant to the UB study Jewels in Our Genes, the first national study of genes that increase breast cancer risk in African-American families, which was completed in partnership with Roswell Park Comprehensive Cancer Center and the Witness Project
• Heather Ochs-Balcom, PhD, principal investigator of the Jewels in Our Genes study and associate professor of epidemiology and environmental health in the UB School of Public Health and Health Professions