Biomedical Ambiguity: Race, Asthma, and the Contested Meaning of Genetic Research in the Caribbean

5. Biomedical Partnerships: Making Genetics Significant

The asthma genetics study is now one of several genetics projects in preparation or being conducted in Barbados by teams from Johns Hopkins University. The genetics of acute lung injury is being researched by a multisited U.S. collaborative effort that now involves a Barbadian researcher. A project on the genetics of obstructive sleep apnea is being conducted by a Johns Hopkins researcher and Barbadian doctors involved in the geneticsof -asthma study. Research on the genetics of dengue fever and on the genetics of asthma severity are extensions of the asthma study, involving several of the same facilitators. These studies involve exchanges between U.S.-based genetics researchers and Barbadian researchers/facilitators. As researchers and facilitators negotiate the relevance of this high-technology science to the postcolonial country, new medical approaches to race, genes, and care are created. Medical Exchanges In a conversation I had with a Barbadian researcher, he explained the reason why so much collaborative international research occurs in Barbados by citing an example: “The two met at a conference. One had access to the patients and the other had contacts with funders.” Genetic research is premised on access to a population (i.e., the ability to get blood samples or Chapter 5 Biomedical Partnerships Making Genetics Significant BIOMEDICAL PARTNERSHIPS 99 other biological materials and some form of medical information by questionnaire or records). The existence of a stable and extensive infrastructure of nurses and physicians who can facilitate recruitment is critical to such research1 (an often underemphasized bureaucracy). The attraction of the access to patients in Barbados is matched by the robust administration of the health care system. As one member of a research team explained about a particular genetics study,“We have to look at the pathology to get names, then contact the doctor to get permission. When the doctor gives permission , then we can contact the patient.” These practices require networks of complete medical records and consistent contact. The reciprocal value of the collaboration for the Bajan researcher is access to genotyping technologies, diagnostic machines, and funding. For example, at a meeting on the genetics-of-obstructive-sleep-apnea project, a Bajan researcher noted that the Queen Elizabeth Hospital (QEH) rejected his requests for a diagnostic laboratory to explore sleep apnea. The result of the meeting was that the Johns Hopkins team would explore providing the sleep lab and funding while the Bajan physician would facilitate purchase of the polysomnography equipment and location of the lab. This access to technology is not necessarily direct: often the U.S. researchers are valued as the mediators rather than the providers of diagnostic technologies, by conducting genotyping in the United States. For example, in the case of the dengue study, plans were made for genotyping to be done at Johns Hopkins for unrelated studies already in progress by the Barbadian researchers. The expertise and technological sophistication of the U.S. teams are accentuated in these agreements, for the Barbadian researchers. Prestige is critical here: as one of the leading biomedical facilities in the world, Johns Hopkins carries the significance of having the most current biomedical knowledge. In addition, the teams offer training of medical staff involved in the studies: by collaborating with the geneticists , doctors and nurses are often flown to the United States to receive training in study protocols, medical procedures, and use of technologies . For the acute lung injury study, plans were made to bring Barbadian nurses to Johns Hopkins for training in study facilitation and to bring internal medicine residents at QEH to Johns Hopkins Hospital to observe internal medicine practices there. This expertise is of particular value to Barbadian physician/researchers both to facilitate the study and to improve medical care. The genetics team emphasizes the high technology, high speed, and large scale of genetic research in making the studies relevant to Barbados (on the significance of such a discourse to genomic funding and research, see 100 BIOMEDICAL AMBIGUITY Fortun 1998). The acute lung injury (ALI) study is part of a Consortium to Evaluate Lung Edema Genetics, which includes the Medical College of Wisconsin, University of Tennessee, and Emory University in addition to Johns Hopkins. As the team noted, the collaboration is designed to create “the world’s largest bank of DNA from patients with sepsis and ALI.” This image of vastness is supported by the expansion of research seen in Barbados. As discussed in chapter 1, the peculiar...