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NIH Participates in Hispanic/Latino Genetics Consultation

By Susan Athey

Representatives from NIH and other federal agencies recently joined 75 opinion leaders and experts from Hispanic/Latino communities across the United States to explore a range of issues related to human genetic research and their significance to Hispanic/Latino populations. Considered a groundbreaking conference, the "Hispanic/Latino Genetics Community Consultation Network (HLGCCN) Summit," was a direct outgrowth of a meeting organized by NIGMS in September 2000 at which NIH solicited input on genetic research from diverse communities. At that meeting, members of the Hispanic/Latino community expressed interest in hosting their own community consultation meeting.

In addition to the participants who gathered at the 2-day summit in Washington, D.C., a larger group of Hispanics and Latinos across the country played a role by completing pre-meeting surveys to help identify key topics for discussion.

Meeting attendees participated in breakout sessions to address specific issues in genetic research.

During the meeting, participants drafted action plans to address matters ranging from engaging Hispanics and Latinos in genetic research to overcoming cultural barriers to the effective use of existing health care services.

The meeting was coordinated by Redes En Acción (Networks in Action), a special populations network of NCI and Baylor College of Medicine. In addition to NCI, NIGMS and NHGRI sponsored the meeting. Several top NIH officials participated in the summit, including deputy director Dr. Raynard Kington, NCI director Dr. Andrew von Eschenbach, NHGRI director Dr. Francis Collins and acting NIGMS director Dr. Judith Greenberg.

Kington acknowledged that, despite tremendous improvements in health in the U.S. during the past century, large health disparities remain across subpopulations.

NHGRI director Dr. Francis Collins explained the importance of a greater understanding of genetics issues as they apply to Hispanic/Latino communities. "The genome is our shared inheritance and, as we study it, it should benefit all of us," he said.

"Communities of color must not simply watch and complain, but [must] be active partners with scientific communities through such activities as this summit," he said.

Von Eschenbach echoed the need for Hispanics and Latinos to be active collaborators in ongoing research.

"I need you — your advice, your guidance, your leadership, your contributions — as well as heavy lifting to raise the opportunities for research," he said.

"We will do everything possible to maintain the summit's momentum," said Dr. Amelie G. Ramirez, associate professor of medicine at Baylor College of Medicine and principal investigator of Redes En Acción and the HLGCCN.

"We expect to achieve this through dissemination of reports on the proceedings, personal contact with decision makers and…future regional community consultation meetings," Ramirez said.

"Latinos want to be part of the solutions and also to benefit from these scientific discoveries, today and for our future generations," she added.

Greenberg pledged NIGMS's support to this effort. "The one thing I can promise you is that this will not be the last meeting like this. We are committed to follow-up," she said.

Dr. Judith Greenberg, acting director of NIGMS, told meeting participants about the institute's commitment to biomedical research training programs, particularly those designed to increase the number of underrepresented minority researchers.

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