The Human Genome Project has transformed the field of human genetics into one that holds the most promise for technological discoveries in the new millennium. In his 1997 State of the Union address, President Clinton named the Human Genome Project first in a list of advances in medical science. In a subsequent speech, he called the next 50 years the "new age of biology," as science continues to unravel the mysteries of human existence.
Genetic conditions affect all economic, social, and racial groups and impact on the health of family members for generations. It is evident that genetics plays a significant role in most common diseases, which places this discipline among the top medical priorities in advanced nations. Therefore, it's ironic that these technological advances have consistently failed to meet the needs of racial or ethnic minorities, who traditionally suffer from poorer health than do non-Hispanic whites. Moreover, communities of color represent a rapidly growing segment of the United States population. It is projected that by the 21st century no one single U.S. population will claim a majority status, and African Americans and Hispanics will compose more than one third of the population.
The lack of inclusion of America's ethnically diverse communities in the genetic revolution can be demonstrated by the fact that only 5.8 percent of genetic counselors in the U.S. are other than non-Hispanic Caucasians, according to figures from the 1996 Professional Status Survey from the National Society of Genetic Counselors. A 1997 survey of 1,084 U.S. medical geneticists and genetic counselors-conducted by Dorothy C. Wertz, a bioethicist in the Waltham, Mass.-based Eunice Kennedy Shriver Center's department of social science, ethics, and law, and her colleagues-found that only 6 percent of those surveyed were ethnic minorities. These surveys show that ethnic minorities are largely underrepresented among scientists who study genes, among those who deliver genetic information to the public, and, most important, among those who set policy decisions governing genetic testing.
The shortcomings of this inadequate representation are exemplified by the targeting of minority groups for genetic testing through the Federal National Sickle Cell Anemia Control Act, passed in 1972 to fund community education, testing, research, and counseling programs for hemoglobin disorders. These efforts, although well-intentioned, at times failed to take into consideration the unique social and cultural needs of communities of color that lead to stigmatization and discrimination by insurance companies, employers, and schools.
Members of ethnically diverse groups face formidable barriers to taking advantage of genetic services. These include communication gaps that arise when genetic service providers are unfamiliar with the cultural and linguistic needs of diverse communities, as well as economic barriers to services that often are not covered by health insurance. Furthermore, genetic education is mainly centered at hospitals and clinics, and fails to reach out to America's diverse communities, thus contributing to their general lack of awareness of the availability and importance of genetic testing. Perhaps the most significant barrier is a lack of trust in the medical profession. This mistrust stems from the Tuskegee experiment in which proven treatment was denied to African Americans. Another source of mistrust is the stigmatization and discrimination once experienced by sickle cell carriers. And the recent violence initiative launched by the National Institute of Mental Health to identify the social and biological causes of violence-suggesting genetic predisposition to antisocial and criminal behavior-is just another reminder to diverse communities that genetics can be used to label individuals as possessing "undesirable" genes.
The lack of participation of minorities in genetic tests is a multifaceted problem. While groups who widely use genetic interventions are well defined genetically, the genotypes of other groups, such as African Americans and Asian Pacific Islanders, are much less "understood." Consider cystic fibrosis testing: The test, which picks up known genetic mutations leading to cystic fibrosis, is most accurate in Northern Europeans, moderately sensitive in African Americans, and practically ineffective in individuals of Asian descent.
Other concerns raised by community leaders address the fact that one objective of the Human Genome Project is the establishment of the blueprints of a "standard" human. Once the project is completed, scientists will be able to find out how an individual's DNA differs from the reference genome. With unequal representation among these being tested, minority leaders and social scientists are alarmed about the labeling of minorities as having "substandard" genes.
Ethnically diverse groups must be properly included and actively participate in the field of human genetics. This requires recruiting and training more minorities into medical genetics and genetic counseling, and providing community-based genetic education. If genetic services are delivered predominantly by whites, with the minority communities acting merely as "recipients," the lack of active participation by communities of color will be viewed as another form of oppression. Moreover, the Human Genome Project, a multibillion-dollar effort funded by America's taxpayers, will be tailored to address the testing and counseling needs of only a "privileged" section of the American public.
As genetic technology continues to pave the way for unprecedented abilities to combat human disease, it is essential that its benefits be realized by every American community. As President Clinton said in a commencement speech at Morgan State University in Baltimore last May, "science can serve the values and interests of all Americans, but only if all Americans are given a chance to participate in science."
Ilana Suez Mittman is a genetic counselor and a clinical assistant professor in the department of pediatrics and child's health at Howard University, the only historically black institution in the U.S. to offer graduate training in genetic counseling. E-mail: email@example.com.