Media Advisory: UB event to examine ethics behind the ownership of DNA, genetic property

BUFFALO, N.Y. – The University at Buffalo will host a public discussion with hundreds of members of the Western New York community on the ethics surrounding research consent, privacy and the ownership of DNA.

Prior to the discussion, guests will view a screening of “The Immortal Life of Henrietta Lacks,” a 2017 film that details how Lacks’ cancer cells were taken without her permission in 1951.

Her cells, which divide indefinitely, have led to hundreds of medical discoveries, including the development of the polio vaccine. But the research also revealed major issues surrounding the ethics of research consent.

These issues, along with the state of genetic research, including studies being conducted in Buffalo, will be discussed. Two of the panelists include a volunteer research participant and a UB professor who studied under one of the scientists involved with Lacks.

When: Today, April 26, from 5:30-8:30 p.m.

Where: Jacobs School of Medicine and Biomedical Sciences at UB at 955 Main St., Buffalo.

The film will begin at 6 p.m. and the discussion at 7:30 p.m. Media are invited to attend. On-site contact is Marcene Robinson, marcener@buffalo.edu or 716-207-5814.

Why: “There is a certain amount of distrust surrounding clinical studies within the community, and those fears are grounded in real, historical facts that we, as researchers, cannot ignore. This event provides the perfect platform for airing those concerns,” said Laurene Tumiel-Berhalter, PhD, director of community translational research in the UB Clinical and Translational Science Institute (CTSI).

Panelists:

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

The event is 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.