Lack of Diversity in Genetic Counselors Could Affect Patients

Newswise — African-American, Hispanic or American Indian patients undergoing genetic testing are unlikely to encounter counselors of their ethnic backgrounds, according to a review appearing in the August issue of the Journal of Genetic Counseling.

"Minorities are underrepresented in genetic counseling. It's not a unique problem to genetics. We see it in health professions as a whole, but it's more pronounced in the genetic counseling professions," said lead author Ilana Mittman, Ph.D., a certified genetic counselor at the University of Maryland at Baltimore.

Mittman's research examined previously published data on ethnic and racial demographics in specific genetic professions and health care professions in general.

She found that, compared to other mental health and health care professionals, genetic counselors are among the least likely to be African-American, Native American or Hispanic. For example, counselors of African-American or Hispanic background hold only 2 percent of the membership in the National Society of Genetic Counselors, even though these populations represent almost one-third of Americans, according to the authors.

In addition, African-Americans comprised only 1 percent of geneticists with medical degrees or Ph.D.s; Hispanics made up only 2 percent of geneticists with these degrees.

"The lack of diversity impacts professionals and people they are trying to help," according to Mittman, because providers must be able to acknowledge cultural, social and religious issues and communicate effectively with patients.

"We're taught to be culturally sensitive [as health care professionals], but none of us can be as culturally sensitive as people from that culture. We can do our best, but we're not going to know the rules. We'll never know all of the issues in their culture," said Edward McCabe, M.D., a genetic medicine specialist at UCLA.

"Patients are stating their desire to have providers who are like them with respect to race. They feel more comfortable, and they are more likely to trust those providers, to disclose information and to follow up on health recommendations," Mittman said.

Although the genetic counseling professions have made efforts to improve racial and ethnic diversity, demographics in this field have remained unchanged for more than two decades.

"Genetics offers a promising take on medicine as we investigate the genetics of common and complex disorders and personalized medicine. It is very important to extend those services to everybody in the population, otherwise health disparities will widen," Mittman said.

The Journal of Genetic Counseling, published by Springer, is an international forum addressing all aspects of genetic counseling. It focuses on the critical questions and problems that arise at the interface between rapidly advancing technical developments and the concerns of individuals at genetic risk. The journal is published bimonthly online and in print (www.springer.com/journal/10897).

Mittman IS, Downs K. Diversity in genetic counseling: past, present and future. Journal of Genetic Counseling 17(4), 2008.