UB event to decode ethics behind the ownership of DNA, genetic property

UB will share the history of arguably the most important woman in biomedical research, Henrietta Lacks, whose immortal cancer cells were used in research that led to hundreds of medical discoveries, including the development of the polio vaccine.

UB will host a public screening of “The Immortal Life of Henrietta Lacks,” a 2017 film that details how Lacks’ cells were taken without her permission in 1951, and explores the ethics surrounding research consent, privacy and the ownership of DNA.

Following the film, a panel of experts will discuss these ethical concerns, along with the state of genetic research, including studies being conducted in Buffalo.

The panelists include a volunteer research participant and a UB professor who studied under one of the scientists involved with Lacks.

The free event will take place from 5:30-8:30 p.m. April 26 at the Jacobs School of Medicine and Biomedical Sciences at UB, 955 Main St., Buffalo.

The film will begin at 6 p.m. and the discussion at 7:30 p.m. Refreshments will be served prior to the screening. Guests are asked to register online.

“We have a diverse panel of university researchers, people who review and approve studies and, most importantly, members of the community,” says Laurene Tumiel-Berhalter, director of community translational research in the UB Clinical and Translational Science Institute (CTSI) and associate professor in the Department of Family Medicine in the Jacobs School.

“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. This event provides the perfect platform for airing those concerns.”

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 that successfully identified and mapped all of the genes in human DNA.

Sponsors include the UB Community of Excellence in Genome, Environment and Microbiome (GEM); the UB Clinical and Translational Science Institute; the Mini Medical School in the Jacobs School; and the Patient Voices Network.

“UB GEM is thrilled to collaborate with university partners and with our community, especially surrounding the Buffalo Niagara Medical Campus, to offer this unique event,” says Jennifer Surtees, GEM co-director and associate professor in the Department of Biochemistry in the Jacobs School.

“This is a chance to see a great movie and then 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 include Timothy Murphy, SUNY Distinguished Professor of Medicine and CTSI director; and 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 include:

• Michael Garrick, 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, principal investigator of Jewels in our Genes and associate professor in the Department of Epidemiology and Environmental Health in the School of Public Health and Health Professions.
• Kyle Mann, institutional review board administrator in the UB Office of Research Compliance. In his role, Mann ensures that UB research is ethical and monitors studies to protect the welfare and rights of participants. 
• Teresa Edgerton, instructor in the Nursing Department at Trocaire College, where she has conducted patient recruitment for clinical trials and teaches courses on professional ethics.