Enhancing the Participation of African Americans in Health-Related Genetic Research: Findings of a Collaborative Academic and Community-Based Research Study
The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans ( ) from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research ( ). The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they “had never been asked.” Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research. 1. Introduction In April 2003 the directors of the Human Genome Project (HGP), an international scientific research project coordinated by the United States Department of Energy and the National Institutes of Health National Human Genome Research Institute, announced that the first draft of the map of the human genome had been completed [1]. It was anticipated that mapping the complete set of DNA would revolutionize health care and lay the groundwork for the development of clinical markers with predictive capabilities and, thereby, shift the disease-treatment trajectory and lead to preventive interventions, tailored treatments, and averted deaths (Figure 1). Likewise, it was anticipated that the map would lead to a better understanding of the causes of cardiac disease, cancer, diabetes, Alzheimer’s disease, mental disorders, and other common and rare diseases; the development of diagnostic tests to detect errant genes; the development of new classes of medicines based on gene sequence and protein structure function; and the development of therapies which use genes in treating genetic and acquired diseases [2, 3]. Figure 1: Disease treatment trajectory. For population groups known to
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