April 23, 2010 — In an unprecedented Utah gathering, hundreds of members from the state’s diverse ethnic groups will meet with University of Utah and National Institutes of Health (NIH) genetics and disease experts for a Community Genetics and Health Forum on April 30 and May 1.
Sponsored by the NIH’s National Human Genome Research Institute (NHGRI), the forum will bring together members of Utah’s African American, African refugee, Chinese, Hispanic/Latino, Native American, and Tongan communities to discuss the relationship between genetics and three chronic diseases of pressing importance to those ethnic populations: heart disease, cancer, and diabetes. The forum, co-hosted by the U of U’s Genetic Science Learning Center (GSLC) and Center for Clinical and Translational Science (CCTS), will take place in two locations – the U of U’s Eccles Institute of Human Genetics on Friday and the Salt Lake Center for Science Education, 1400 W. Goodwin Ave (1150 N.) on Saturday.
Each year NHGRI sponsors a Community Genetics Forum event in a different region of the country. The goal of these forums is to develop models for community engagement around the topic of genetics and to develop genetics education materials, that can be used or adapted by other communities. The GSLC received the award to host the Forum this year for the southwestern region.
Thomas N. Parks, Ph.D., U of U vice president for research, and Lynn B. Jorde, Ph.D., professor and chair of the Department of Human Genetics, will open the forum and welcome attendees on Friday morning. Eric Green, M.D., Ph.D., director of the NHGRI, also will address the forum by video on Friday and Saturday mornings. “NHGRI launched the Community Genetics Forum program to help the public understand the issues around the use of genetic and genomic information in medical care,” Green said. “We also want to hear from the public about its questions and concerns as we seek to use genomic research to improve public health.”
Louisa A. Stark, Ph.D., director of the GSLC, says the forum not only will give local communities the chance to learn about chronic diseases that affect them but also can help shape the nation’s strategic plan for researching genetics-related medicine for years to come. “This is a unique opportunity for Utah’s ethnic communities to be heard as the National Human Genome Research Institute crafts a new strategic plan to guide genomics research and medicine for much of the next decade,” Stark said. “Along with helping to shape our national policy, these members of our community also will have the chance to learn about chronic diseases of great concern to them.”
Friday’s program will feature panels of NIH and U of U experts discussing topics of increasing prominence in medical-genetics research: the integration of genetics into electronic medical records (8:15-10 a.m.) and the investigation of common diseases, particularly those with rare gene variants (10:30-11:30 and 12:30-1:30). The panelists discussing the integration of genetics into the medical record will include Joyce A. Mitchell, Ph.D., professor and chair of the Department of Biomedical Informatics, Marc Williams, M.D., director of the Intermountain Healthcare Genetics Institute, and Greg Feero, M.D., Ph.D., special advisor to NHGRI director Green. The experts discussing investigating common diseases will be Ken R. Smith, Ph.D., professor of family and consumer studies and associate director of the Utah Population Database, Mark Yandell, Ph.D., associate professor of human genetics, and Teri Manolio, M.D., Ph.D., director of the NHGRI Office of Population Genomics.
Laura Rodriguez, Ph.D., acting director of the NHGRI Office of Policy, Communications and Education, will talk about research policies and priorities at the federal level (2-3 p.m.)
On Saturday, members of seven organizations – the Calvary Baptist Church; Hispanic Health Care Task Force; Indian Walk-in Center; National Tongan American Society; United Africans of Utah; Native (American) Research Center; and a Chinese LDS church ward – will meet at the Salt Lake Center for Science Education, 1400 W. Goodwin Ave. (1150 N.). In 2009, the GSLC gave each of those organizations $5,000 grants to hold programs about genetics and health within their communities. From those gatherings, held during the past several months, heart disease, cancer, and diabetes emerged as three diseases of great concern to these populations.
After welcoming remarks by the NHGRI’s Green and Vence Bonham, Jr., J.D., chief of the education and community involvement for the agency, successive sessions will feature leaders of the seven community organizations relaying brief stories about the focal diseases and the impact on their populations: members of the Tongan and Chinese communities will discuss heart disease; Hispanic/Latino and African American leaders will talk about cancer; and two representatives of Native American groups will focus on diabetes. The forum’s organizers have asked each community to bring 50 members to Saturday’s session.
Leaders from the various ethnic groups say the programs they held with their communities already had an impact on their members.
“From the first meeting, a light clicked on,” said Sylvia Rickard, director of the Utah Breast Cancer Network and Hispanic Health Care Task Force Conference chair. “People are constantly asking questions about genetics and health now. They want to know how genetics impacts them, their health, their families, and their community and how to make life better.”
The Rev. France Davis, pastor of the Calvary Baptist Church in Salt Lake City, said the meetings have prompted some in the African American community to watch their diet more closely and be more prepared when they see their medical providers, including taking written information with them to appointments in some cases. And the meetings have inspired conversations about family health history among African refugees, according to Valentine Mukundente, of United Africans of Utah. “The knowledge and increased conversation of family health history have made the largest impact on our United Africans of Utah communities,” Mukundente said.
Speakers from the various ethnic populations will include: Fahina Pasi-Tavake, executive director of the National Tongan American Society; Sylvia Rickard, director of the Utah Breast Cancer Network and Hispanic Health Care Task Force Conference chair; Harold O. Fields, pastor, Unity Baptist Church; Ed Napia, substance abuse and prevention manager at the Indian Walk-In Center; and Marla Pardilla M.P.H., M.S.W., and epidemiologist Lillian Tom-Orme, R.N, M.P.H., and Ph.D., research assistant professor of internal medicine – both members of the Native Research Network.
Following those speakers, experts from the NIH and the University of Utah will give the latest clinical and research perspectives on each disease. Those presenters will include: Greg Feero, M.D., Ph.D., special advisor to the NHGRI director, and cardiologist Dean Y. Li, M.D., Ph.D., professor of internal medicine and director of the U of U Molecular Medicine Program, speaking about the clinical and research aspects of heart disease and genetics; Jean Jenkins, R.N., Ph.D., senior clinical advisor to the NHGRI director, and Deborah Neklason, Ph.D. research assistant professor of oncological sciences and the U of U’s Huntsman Cancer Institute, speaking about the clinical and research aspects of genetics and cancer; and endocrinologist Donald A. McClain, M.D., Ph.D., professor of internal medicine and director of the CCTS at the University, and Edward Ramos, Ph.D., research fellow and policy analyst at the NHGRI, speaking about the clinical and research facets of diabetes and genetics.
The forum wraps up Saturday afternoon with a question and answer period followed by closing discussion among leaders of the various community organizations.
Schedules for both days are available at http://learn.genetics.utah.edu/forums.