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Hablemos Genomics: Engaging Latinos in the Future of Genomic Science


On 3 February 2004, 18 Latino leaders gathered in Bethesda, Maryland, to serve as scientific and cultural advisors to the National Human Genome Research Institute (NHGRI) for a roundtable discussion on "Engaging Latino Communities in the Future of Genomic Science." The participants represented a balanced cross-section of today's Latino leadership in the United States, including grassroots community and health care organizations, health advocacy groups, and researchers from academia and private industry.

The meeting was organized by NHGRI with collaboration from the National Institutes of Health's Office of Rare Diseases, Baylor College of Medicine's Redes En Acción , the National Hispanic Medical Association, and the National Council of La Raza. The purpose of the meeting was to identify and prioritize realistic opportunities for NHGRI to expand its outreach into the Latino community.

Roundtable Discussions

At the opening session, held at the Lawton Chiles International House, participants were asked to formulate a very specific set of recommendations. "NHGRI and the Human Genome Project are committed to catalyze progress in the ethical, legal, and social implications (ELSI) of genomic research," said Francis Collins, director of NHGRI and chair of the roundtable. "We would like to ensure that Latinos are not unaware, nor excluded from the ongoing medical and scientific revolution."

In an effort to provide focus to the debate, several initiatives in place at NHGRI were presented, including the minority action plan, designed to increase the number of underrepresented minorities trained in genomics and ELSI research and the Genetic and Rare Diseases Information Center's (GARD's) new service of assistance in Spanish (see box below). Animated rounds of discussion on research, education, training, and public policy topics followed the presentations.

GARD Information Center Now Offers Assistance in Spanish

There are more than 6000 genetic and rare diseases afflicting more than 25 million Americans. An "orphan" or rare disease is generally considered to affect fewer than 200,000 individuals in the U.S. As a result, information about these disorders may be difficult to find, particularly in Spanish. In its effort to provide better service to Hispanic communities, the GARD Information Center has expanded their service to Spanish-speaking callers. Information specialists fluent in Spanish and English provide callers with information about specific illnesses from public domain sources, including reliable Web sites, brochures, articles, and even book chapters. This information will be summarized in Spanish, and Spanish Web sites pertaining to genetic and rare diseases will be listed. However, GARD does not provide genetic counseling nor offer diagnostic testing, professional referrals, medical treatment, or advice.

Spanish-speaking information specialists with GARD can be reached by sending an e-mail to or by calling the center's toll-free telephone line, 1-888-205-2311, between 12:00 p.m. and 6:00 p.m. Eastern time, Monday to Friday. Requests can also be submitted by text telephone (TTY), fax, and mail.

Cultural and Linguistic Needs

A recurrent topic throughout the day was the need to address in a sensitive, nonstereotypical way the cultural and linguistic needs of the Latino population. Such guidelines would not only increase the participation of Latinos in clinical trials and population genetic studies but would also make it easier for Latinos to access the available medical and educational resources so they can make well-informed health care decisions.

Although there are several ethnically diverse populations who identify themselves under the umbrella term Latino, many large medical studies of the general population failed to incorporate Latinos and their genetic makeup into their investigations. Increased participation by Latinos in genetic studies would improve our understanding of the genetic risks involved in diseases such as diabetes, cardiovascular disease, and breast and cervical cancers, all of which have a higher prevalence within the Latino community than that of the general population.

Furthermore, strategies to empower the Latino community from the inside out were also discussed. "Latinos have to take ownership of research. It is time to move from research subject to researcher," stated Rosa Martha Zarate-Macias, a spirited grassroots community leader representing the Libreria del Pueblo and the Capulli Health Project. Suggestions to promote interest in genetic research among Latinos included the development of partnerships with grassroots organizations such as Misión y Compromiso, the promotoras in California, and the national nurse associations. These associations would aid in the dissemination of information about the Human Genome Project to rural communities, help recruit more role models into educational programs, and help promote postgraduate training in genetics for primary health care providers who are already serving in the Hispanic community.

Most importantly, the need to pass federal legislation for nongenetic discrimination was given high priority at the meeting and lively debates resulted from this topic. This is often a delicate matter for minorities who fear inequity in opportunities with regards to immigration, health care, health insurance, and employment.

Overall, there was a great deal of enthusiasm about the potential of NHGRI to recruit resources and to engage organizations and laboratories around the country in a two-fold mission: recruiting more Latino students into genomic careers and educating the general Latino population about the benefits of "applied" genomics. Follow-up rounds of discussion on the subject between NHGRI, the Latino board, and additional Hispanic advisors are expected.

Belen Hurle, Ph.D., is a Research Fellow at the National Human Genome Research Institute at the National Institutes of Health in Bethesda, Maryland, and may be reached at

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