Bioethics and the Latino Community

Few can argue about the importance of scientific research for powering our economy and improving our quality of life. Complications arise, however, when various groups of Americans have different priorities and visions for the use of finite scientific resources. These complications can be surmounted by unifying America’s priorities for biomedical research. That is why the Latino voice must be heard. At their core, appeals for Latino-relevant research are not just about the specific interests of one group, but about universal values. The Latino community has much to gain and much to contribute by stepping into the bioethical debate about America’s research priorities.

Perhaps the bioethical issue most relevant to Latinos is the need to resolve health disparities through stem cell, genetic, clinical and public health research. Latinos, for example, are twice as likely as non-Hispanic whites of the same age to have diabetes and to develop complications from diabetes such as heart disease, high blood pressure, blindness, kidney disease, amputations and nerve damage. These disparities are usually due to combinations of environmental and genetic factors. In order to study the origins and development of diseases, America’s research agenda must include a broad swath of the Latino population. The National Institutes of Health has so far committed $61 million to observe more than 16,000 Latinos over 6 years through the Hispanic Community Health Study, the nation’s largest longitudinal study of Latinos. Yet there is still so much more to be gained by incorporating the study of Latino populations into other research projects.

Since Latinos are by no means a monolithic population, their inclusion in public health research will allow scientists to dissect the influence of ethnic origin, genetics and environment on health disparities. With diabetes alone, prevalence is 8.2 percent for Cubans, 11.9 percent for Mexican Americans, and 12.6 percent for Puerto Ricans. Some of these differences may be due in part to lifestyle or environmental factors, but they can also be due to differences in ancestral origin, since most Latinos possess mixtures of European, Native American, and/or African ancestries. It is important to look at genetic diversity and health disparities on all of these levels and contexts, since one classification can often mask another. This requires a concerted effort on the part of scientists, caregivers, and public health officials.

The good news is that Latinos and other communities of color have already achieved inclusion with provisions in the stimulus bill on comparative effectiveness research, as well as with other federal research efforts. But the research process does not end with research funding decisions. The clinical and biomedical research process must also be more responsive to patients, who should be allowed to tell researchers and doctors what kinds of questions they want research to answer. This will create actionable, results-oriented research processes that incorporate the histories, lifestyles, and values of patients. The last thing we want is for the research establishment to become over-reliant on a single indicator, measurement or classification that does not accurately capture a patient’s concerns or can even harm the patient.

Genetics can be especially controversial in this respect, since human history has been marred by ideologies masquerading as science that reduce the beauty of human diversity to crude notions of “good” and “bad.” A recent commentary in the journal Science warns of “the limitations of categorical thinking about how genetic information is produced and applied.” This will be a challenge not just for scientists, doctors, and individual patients, but also for ethnic groups. Latinos—like all people—will be asking themselves many difficult questions: How do we reconceive our identity, our social priorities and our relation to other groups when presented with new genetic, historical, or public health information?

All ethnic and racial groups have much to learn from one another. And the voice of the Latino community is needed more than ever as science and medicine begin to make increasingly rapid progress. Let us make sure that progress is inclusive, responsive, and ethical.