Views of Black nurses toward genetic research and testing.

In April 2003, researchers announced the completion of the Human Genome Project (HGP). Directed by the National Institutes of Health and the U.S. Department of Energy, the HGP was the first publicly funded international research collaborative credited with the successful sequencing of the entire human genome. Even in its infancy, the implications of the HGP for forwarding biomedical science and improving the population's health were well publicized. Improved diagnosis of disease; early detection of genetic predisposition to disease; and customized drug therapies to meet the health needs of diverse ancestral groups throughout the world were a few of the espoused benefits of successfully decoding and uncovering the human genome sequence. Most scholars agree that the field of medical genetics has almost unlimited potential to revolutionize medicine. Examples of current applications include the use of a family health history to facilitate the identification of disease susceptibility to common health conditions such as diabetes, cancer, and heart disease so that a management plan can be developed to reduce modifiable risk. Reproductive genetic testing is being used to inform potential parents about the possible outcomes of current and future pregnancies. Knowing this information can help prospective parents with decision making regarding family planning and reproductive health matters. Newborn screenings enable the early diagnosis of gene-based disorders such as phenylketonuria that could have long-term health implications. Pharmacogenomics explores genetic variations related to drug response with implications for individualized pharmaceutical treatment options. Genetic research and testing will continue to play a major role in risk assessment, disease detection, and treatment in the future. To fully understand the biological meaning of the information gleaned from genetic research and testing at the population level, it must follow that the effects of genetic diversity must be critically considered. This is of particular significance among high-risk populations such as Blacks living in the United States, as well as around the world, who continue to be disparately impacted by myriad chronic diseases to an extent that is unobserved in other ancestral subgroups (Hall et al., 2011; Liao et al., 2011; Ogden, 2009). The term Black is a broad descriptive, often used interchangeably with African American, indicating African descent groups (Agyemang, Bhopal, & Bruijnzeels, 2005). In practice, this term generally suggests African ancestry and may also connote other non-White minority groups. The phrase Black American expands and clarifies this definition by signifying residence within the Americas and its territories. For the purpose of this article, we are using the terms Black and Black Americans and the phrase Blacks in America to denote those of African ancestral origin who reside in the Americas or its territories. It is well documented that among Black Americans the perception of exploitation by and subsequent mistrust of the research establishment appears to negatively influence willingness to participate in genetic research and testing. Findings from several studies show that mistrust of the medical community acts as a primary barrier to Black American participation in all domains of biomedical research (Byrd et al., 2011; Griffith, Passmore, Smith, & Wenzel, 2012; Suther & Kiros, 2009). Other researchers such as Halverson and Ross (2012) also found that participation among Black Americans in biomedical research advanced by means of genetic research databases such as biobanks was also influenced by their degree of trust versus mistrust toward the research community. Based on perceptions of discrimination and mistrust, other ethnic-ancestral minority groups in the United States, such as Latinas, Hispanics, Native Americans, and Asians, have also indicated less willingness to participate in genetic research and testing (Nwulia et al., 2011; Sung, 1999; Thompson, Valdimarsdottir, Jandorf, & Redd, 2003). Global trends appear to be similar to U.S. trends. Indigenous peoples of Mexico, Australia, Canada, the United Kingdom, and elsewhere have also shown a higher propensity to decline DNA sampling for research studies (Hussain-Gambles et al., 2004; Jacobs et al., 2010; Meisel, Shankar, Kivimaki, & Wardle, 2012). In addition to the historical issues of trust associated with medical research, there are biological-specific challenges to investigator trust that may influence participation in genetic research and testing. One such issue among members of the Black population is the perceived misuse of generated information for discriminative practices (Armstrong et al., 2012). In a 2003 genetics ethics report, the World Health Organization concluded that: All adults have a right, if they so choose, to know their genetic makeup and implications for the health of their potential offspring, to be educated about their own genetics, and to have the services available to act upon their knowledge. (p. 6) However, documented instances of discrimination on the basis of genetic information can be found in the extant literature. Among these works is a discrimination paper published by the Council for Responsible Genetics (2001). This document highlights several researcher-supported genetic-based discrimination cases. For example, some genetic traits such as sickle cell anemia are found more often in the most vulnerable ancestral subgroups such as Black Americans (Nussbaum, McInnes, & Willard, 2007). For this reason, many believe that the misuse of genetic information from research and testing could disproportionately impact these populations. Community-based approaches to communicating the value of genetic research and testing have been identified as strategies to successfully overcome culturally and socially influenced challenges among vulnerable populations (Johnson, Powell-Young, Torres, & Spruill, 2011; Johnson et al., 2009). One strategy that has received noteworthy attention in the literature for recruitment and education purposes is the use of researchers and providers who are ancestrally similar to the prospective genetic research and testing participants. Systematic analysis of the relevant genetics literature revealed that research participation rates among Black Americans increased by as much as 75% when the prospective participants and research team were of like ancestry. Diaz, Mainous, McCall, and Geesey (2008) found that Black Americans were more likely to provide DNA for genetic testing if the investigator was a Black American. The probability of participation in a genetics-related project was also found to increase if the investigator's supporting institution had a legacy of engagement in and fair treatment toward the Black community. Based on these data, ethnic and minority nurse associations that advocate for the health improvement of underrepresented groups are in a prime position to facilitate recruitment efforts and to disseminate knowledge about the importance of participation in genetics-based protocols and testing in the communities they serve. One such organization, the National Black Nurses Association (NBNA) is a professional association with chapters in all 50 states, the District of Columbia, and many U.S. territories. The NBNA membership represents approximately 150,000 active and retired registered nurses and licensed vocational-practical nurses of African heritage. A primary goal of the NBNA is to facilitate collective actions that address the healthcare needs of Black Americans within their communities. In recent years the NBNA has been proactively engaged in promoting genetic awareness among its membership. This has occurred by broadly publicizing genetic information from both general and legislative perspectives. However, to meaningfully advance an understanding of the value of the genetic enterprise throughout the Black community, it is critical to recognize and appreciate the views held by Black nurse stakeholders with respect to participation in genetic research and genetic testing. Researchers suggest that in many instances Black healthcare professionals share the same opinions of ancestrally driven healthcare and research inequalities as the general Black populace (Johansson, Jones, Watkins, Haisfield-Wolfe, & Gaston-Johansson, 2011). These positions could be additionally problematic when striving to meaningfully integrate the concept and value of genetic research and testing at the community level. Currently, however, there is a lack of information about the views that Black nurses hold toward their own and other Black Americans' participation in genetic research and testing. The primary aim of this study was to determine the views that Black nurses have about their current genetic knowledge: their beliefs regarding genetics as explanatory models for disease prevalence, the potential for health information discrimination, population- versus self-participation in research and testing, and support for an awareness platform. A secondary aim was to determine if these viewpoints diverged as an effect of the nurses' education level, functional area, age, and gender.