Hussman Institute’s Historic Genomics Conference Focuses on Ending Disparities
UM President Donna E. Shalala, who oversaw the Human Genome Project as secretary of the U.S. Department of Health and Human Services, opened the Miller School’s first conference aimed at ensuring that all populations benefit from the revolutionary promise of genomic medicine by embracing the summit’s theme of urgency.
“I agree that we can’t wait,” the President said, referring to the title of the May 31-June 1 gathering, “Why We Can’t Wait: Conference to Eliminate Health Disparities in Genomic Medicine,” presented by the John P. Hussman Institute for Human Genomics. “We can’t wait because we’re about to get a different platform, because the health care system is going to change under our feet, and because it is the right thing to do and it’s going to transform medicine around the world.”
The goal of the groundbreaking conference, which attracted nearly 200 physicians, researchers, ethicists, genetics counselors, attorneys, public health specialists and others from more than 20 states and five countries, was to formally recognize that genetic advances enabled by the Human Genome Project also have the potential to exacerbate health disparities that affect blacks and Hispanics, and to develop strategies to thwart that looming possibility.
Already disproportionately burdened by higher health risks, limited access to health care, and poorer outcomes, Hispanics and blacks are under-represented in most research, including genetic research. As such, they may not benefit from the individualized risk assessments and prevention and treatment plans genomic medicine promises for common, complex diseases — unless their participation in genetic research increases.
As Dean Pascal J. Goldschmidt, M.D., noted during his keynote address, the least privileged members of society could gain the most from a future where genomic medicine enables early intervention and treatment of complex diseases.
President Shalala called the decision to integrate the health disparities issue into discussions on the promise of genomic medicine as significant as the decision in the early 1990s to integrate ethics into the genome project’s quest to decode the 20,000-plus genes in human DNA.
“This issue is going to be important for all of us in the decades ahead,” she said, congratulating conference hosts Margaret Pericak-Vance, Ph.D., director of the Hussman Institute, and Jeffery M. Vance, M.D., Ph.D., chair of the Dr. John T. Macdonald Foundation Department of Human Genetics, for their vision in organizing what is planned to be an annual conference.
In her welcoming remarks, Pericak-Vance said the conference was the culmination of the Genetics Awareness Project (GAP) that the Hussman Institute undertook in underserved communities, with support from Life Technologies Foundation, to improve minority participation in genetic research.“We began GAP in South Florida and quickly realized that the challenges we were facing were national with many ‘GAPs’ in knowledge and understanding that needed to be addressed,” she said. “Genomic medicine must benefit all. We want to be part of the solution.”
In his keynote address, titled “Get at the Heart of the Matter: Atherosclerosis Genetics,” Dean Goldschmidt, a pioneer in stem cell-mediated arterial repair, illuminated the importance of genetic research by noting that none of the genes thought to contribute to atherosclerosis just a dozen years ago actually do. Neither do the associated genes have much to do with cholesterol, hypertension or cigarette smoking.
“There are now, on the low side, 30 to 50 genes that have been identified that are associated with atherosclerosis and the genes that are around them are totally different from what we thought,” he said. “We could not have guessed this without the human genome project, so anybody who tells you that genetics is not important, well, look at this.”
Offering a glimpse into the future, he said medicine will increasingly focus on a patient’s susceptibility to disease, and for one simple reason: “We won’t have enough money to wait for the disease to be there, then treat. It’s going to be too expensive.”
But, he noted, there is a huge benefit to such cost efficiency, particularly for those most impacted by health disparities. For the first time, reducing costs will save lives because it will require intervening and treating risk factors well before disease reaches the hinge point, enabling the redirection of limited resources where they are most needed. “This is particularly true for the least-privileged members of our community. This is fundamental to health disparity,” he said.
In the closing keynote address, Vice Admiral Richard H. Carmona, M.D., M.P.H., the nation’s 17th surgeon general who endured homelessness, hunger and health disparities as a Hispanic youth in New York City, said family history should be the starting point for genomics.
“People understand that all their uncles died in their 40s from heart attack, but family health history is a one-liner on a medical chart. What do docs do? We order tests,” he said. “Most of what I saw as a trauma surgeon was preventable. Our system is not a health care system, it’s a sick care system.”
In addition to Pericak-Vance, the conference was co-chaired by Susan Hahn, M.S., CGC, assistant director for communication and compliance, and Joycelyn M. Lee, Ph.D., associate research scientist. Other Miller School speakers included Erin Kobetz, Ph.D., M.P.H., assistant professor of epidemiology and public health, and Robin N. Fiore, Ph.D., director of Special Ethics Initiatives for UM Ethics Programs.