Hussman Institute Co-Hosts Disparities Conference

More than 160 physicians and researchers representing a wide variety of disciplines and nationalities gathered in Washington, D.C., on September 4-5 for the third annual “Why We Can’t Wait: Conference to Eliminate Health Disparities in Genomic Medicine.” The conference, co-hosted by the University of Miami Miller School of Medicine and Stanford University School of Medicine, formally acknowledged the growing impact of health disparities on genomic medicine translation. In seeking solutions, the group of experts focused on policy issues related to genomics and health disparities.

“In the United States, Hispanics, Latinos, African-Americans, and blacks have disproportionally higher health risk factors, limited access to health services, and poorer health outcomes and life expectancies than non-Hispanic whites,” said Joycelyn Lee, Ph.D., M.B.A., conference co-chair and associate scientist at the Miller School’s John P. Hussman Institute for Human Genomics. “Health disparities, however, are not unique to diverse groups within the U.S.; they have global impacts.”

The 25 conference speakers assessed the impact of genomic medicine on disparities in healthcare and demonstrated the impact of current policy and policy changes that may remedy or exacerbate health disparities related to genomic medicine. The attendees learned how underrepresentation in genomic research is being addressed by government agencies and what efforts are being made to facilitate access to genomic medicine clinical services. Kathleen Sebelius, the former U.S. Secretary of Health and Human Services and conference keynote speaker, discussed health disparities and the Affordable Care Act.

“Genomic medicine has the potential to greatly mitigate health disparities by changing healthcare from a discipline that merely reacts to disease to one that predicts, prevents, and/or tailors treatment,” said conference co-chair Margaret A. Pericak-Vance, Ph.D., Director of the John P. Hussman Institute for Human Genomics and the Dr. John T. Macdonald Foundation Professor of Human Genomics. “To be successful, we need to include diverse populations in research and clinical applications and improve access to new services.”

Conference co-chair Carlos D. Bustamante, Ph.D., said, “What is so important about this conference is that it brings together experts from diverse fields to exchange ideas and best practices, ranging from diversity in research and in the workforce to the impact of prenatal genetic testing on disparities.” Bustamante, who is co-founding Director of the Stanford Center for Computational, Evolutionary, and Human Genomics at Stanford University School of Medicine, added, “We hope that it will catalyze efforts to minimize and eventually eliminate health disparities in genomic research and medicine.”

“Those of us who are clinicians, researchers and public health specialists in the field must be advocates,” said Susan Estabrooks Hahn, M.S., C.G.C., conference co-chair, assistant director of communications, compliance and ethics, associate director of the Center for Genomic Education and Outreach at the Hussman Institute and President of the American Board of Genetic Counseling. “We are the most well-suited to anticipate and address emerging trends in inequities, not only in access to genetic services and testing, but in the caliber of our research data which will drive changes in healthcare. It is clear we have a lot of work to do quickly before the problem gets away from us.”

Plans are underway for the fourth Conference to Eliminate Health Disparities in Genomic Medicine, to be held in New York City. The speakers’ slides are available on the conference website.

The conference was made possible with funding from the Hussman Foundation, Ancestry DNA, March of Dimes, and Shire Plc. It was also partially funded by grant number R13MD008154-02 from the National Institute on Minority Health and Health Disparities and the National Human Genome Research Institute and by grant number 1UL1TR000460, Miami Clinical and Translational Science Institute, from the National Center for Advancing Translational Sciences and the National Institute on Minority Health and Health Disparities. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.

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