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NHGRI Launches Effort to Step Up Minority Representation

BETHESDA, Md., May 21 - The National Human Genome Research Institute is launching an initiative to increase minority participation in genomics. 

"We need to include minority communities in a more substantive way, both as researchers and participants," NHGRI director Francis Collins said at a meeting of the National Advisory Council for Human Genome Research.

"The study of human variation is becoming more important, and clearly needs input from communities of color," said Collins. 

At a workshop last month, the NHGRI put together an action plan to increase the number of underrepresented minorities trained in genomics research. Among the groups that are underrepresented are African Americans, Hispanics, Native Americans, and Asian/Pacific islanders.

While no specific funding level has so far been assigned to the effort, Collins said, "It will be a budgetary item of the highest priority." The action plan includes K-12 education, public outreach, increased liaisons with minority organizations, training grants, and NHGRI funding of academic programs at minority institutions or targeted to minority students. 

One early collaborator in NGHRI's new push to include minorities is the National Human Genome Center at Howard University, a traditionally African-American institution in Washington, DC. The center, which was formally dedicated at a conference held earlier this month, specializes in the study of genome variation in African, African-American, and other African diaspora populations.

It also tackles ethical, legal and social issues in the context of minority needs and concerns. In order to highlight NHGRI's minority outreach program and reach a wider audience, the institute's annual Consumer Day, scheduled for the fall, will be held in conjunction with the NHGC. 

Collins recently traveled the Southwest, meeting with Native American medicine men and women and spending a day at Dine College, a Navajo institution.

"There are deep concerns about how this research might conflict with their views and traditions," said Collins about the Native American community. The goal of the outreach effort is to learn to be sensitive to such concerns, while at the same time allowing these communities to benefit from the health advances resulting from the genomics revolution. 

"We have to go forward in a way that gets beyond the cynicism about how difficult it is to recruit minorities for genome research," Collins said. 

The cynicism runs both ways, according to Kim Nickerson, assistant director of the American Psychological Association's Minority Fellowship Program. In the past, many minority researchers and participants have felt that they were asked for feedback "only to provide political cover to an institute," he said. Real efforts and progress must be made in order to bring minorities to the table, he added. 

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