college park, maryland

The concerns of ethnic minorities about genetics research and related policies are to be addressed by a coalition of US academics, clinicians and community advocates. The coalition, which argues that the interests of a substantial proportion of the US population are frequently overlooked by genome researchers, has promised to provide a focus for these concerns.

The multicultural task force was set up last week at the end of a two-day symposium on genetics and ethnic minorities sponsored by Howard University in Washington DC and the Sinai Hospital in Baltimore, Maryland. The organizer, Ilana Mittman, who is director of the genetic counselling programme at Howard, a historically black college, said at the symposium: “The interests of communities of colour must be tied to the design and implementation of genetic policy.”

Mittman said that the new group plans to link up with the American Association for the Advancement of Science to organize legislative hearings. The group would press Congress to link funding for genome research to performance in this area. Informed consent, institutional review boards and possible bias in research design, scientific review and funding would all come under scrutiny, she said.

Patricia King, law professor at Georgetown University in Washington DC, said: “The conceptual framework doesn't work any more.” She argued that existing structures, such as institutional review boards, broad-based recruitment and informed consent, had each failed to provide sufficient protection for minorities. Researchers needed to find ways of ensuring that those who contribute to research are also able to benefit.

Genome-project administrators at the meeting acknowledged there is work to be done. “I'm here to listen and learn; I would be first to say we're not doing enough,” said Dan Drell, who oversees research in the ethical, legal and social implications (ELSI) aspects of the human genome programme for the Department of Energy.

Participants argued that definitions and initiatives developed solely from the perspective of white Americans risked diverting attention from some urgent needs of non-whites. For example, they complained about the decision to offer cystic fibrosis screening to all pregnant women, pointing out that African-Americans, Asian-Americans and Latinos are very unlikely to be carriers.

There was also criticism of researchers for lumping together ethnic groups into broad categories such as Asian-Americans and Hispanics, masking health problems particular to certain subgroups.