March 28 Fundraiser Evening Explores DNA Ownership, Identity and Rights in the Genetic Information Age
Rochester, NY— A penetrating and engaging exploration into culture, health, genetic “ownership,” and the critical process of informed consent provides the impetus for the Friends of Ganondagan fundraiser, Friday, March 28, 2014, to coincide with the world premiere of the play Informed Consent at Geva Theatre Center, 75 Woodbury Blvd., Rochester.
With support by Presenting Sponsor Rochester Clinical Research, the fundraiser evening looks at the personal and national debate about DNA research and responsibility. In the medical research field, informed consent is the critical communication between subject and investigator about potential research risks and benefits, including its specific purpose and usage.
The fundraiser begins at 6:30 pm with a dessert and coffee reception, continues with the Informed Consent prologue followed by the full Informed Consent performance, and closes with a talk back panel discussion at 9:30 moderated by director Sean Daniels with guest panelists Peter Jemison (Seneca), Ganondagan State Historic Site Manager, and Dr. Carl D’Angio from the University of Rochester’s Clinical and Translational Science Institute.
“In any research model, scientists must ask themselves: what is the benefit to the Native American subjects? Secondly, what are the ethical standards that a professional must adhere to? Then ask yourself how would you wish to be treated,” said Jemison. “The relationship between Native Americans and scientists must be built upon trust. If that trust is broken repairing it is nearly impossible."
The play Informed Consent, written by Deborah Zoe Laufer, is based on the true story of the Havasupai Tribe who won a legal fight to limit the research on their DNA. According to the 2010 New York Times article, “members of the tiny, isolated tribe had given DNA samples to university researchers starting in 1990, in the hope that they might provide genetic clues to the tribe’s devastating rate of diabetes. But they learned that their blood samples had been used to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories.”
“The opportunity for a fundraiser in conjunction with this play gave Friends of Ganondagan a perfect platform to create a dialogue surrounding cultural sensitivity and respect, as well as shedding light on the important work of our non-profit organization,” said Meg Joseph, executive director of the Friends of Ganondagan. The fundraiser supports the Friends’ varied cultural and educational events and programming which connect the community with the living culture of the Haudenosaunee (Iroquois) through Ganondagan State Historic Site.
The Friends’ recently developed agri-business—the Iroquois White Corn Project—is reintroducing traditional, low-glycemic index Iroquois White Corn food products to enhance nutrition and provide a healthy food alternative.
In addition to Presenting Sponsor Rochester Clinical Research, this fundraiser is made possible through support by Event Sponsors The Pike Company, and Ebets and Tom Judson; Reception Sponsor Genesee Regional Bank; University of Rochester Educational Partners: Division of Medical Humanities & Bioethics, School of Medicine and Dentistry; Clinical and Translational Science Institute, URMC; Council for Diversity and Inclusiveness in the School of Nursing; University Committee for Interdisciplinary Studies (UCIS) Cluster for Health and Human Values and Cluster in Genetics; Office of Graduate Education & Postdoctoral Affairs, School of Medicine and Dentistry; University Office for Faculty Development and Diversity; Office of Faculty Development and Diversity, School of Medicine and Dentistry; and Department of Anthropology; as well as Patron Sponsors John Ninfo and Judith Ranaletta; and Madeline H. Schmitt and Michael P. Farrell. Event signage sponsor is Mobile Graphics.
For complete information, visit www.ganondagan.org/Events-Programs/Informed-Consent-Fundraiser or call Friends of Ganondagan at (585) 742-1690.
