Race, Genes and Health: Public Conceptions about the Effectiveness of Race-Based Medicine and Personalized Genomic Medicine
Creators: Feldman, Naumi Mira
Publisher: name: Columbia University
Year: 2014
Subjects: subject: Genetics
subject: FOS: Biological sciences
subject: Race--Social aspects
subject: Personalized medicine
subject: Pharmacogenomics
subject: FOS: Medical biotechnology
subject: Social medicine

description: OBJECTIVE: Personalized genomic medicine (PGM) has been lauded as the future of medicine, as new human genomic research findings are applied towards the development of screenings, diagnostic tools and treatments that are tailored to the genomic profiles of individuals.  However, the development of PGM is still in its nascent stages, therefore, some have supported the development of clinical tools and treatments based on population-level characteristics, such as race or ethnicity.  Race-based medicine (RBM), has been, and continues to be, promoted as an interim form of PGM, and although an academic debate has flourished over medical, social and ethical concerns related to RBM, to date, there have only been a few small studies that have examined lay beliefs and attitudes regarding RBM.  The extent to which the greater American public would believe in the effectiveness of RBM and indicate an intention to use RBM is unclear.  Furthermore, it is possible that racial and ethnic groups would differ in their beliefs and attitudes regarding RBM, considering RBM implies the controversial and contested conceptualization of race as having some genetic basis.  Therefore, the purpose of this dissertation study was to use, for the first time, a nationally representative sample of adult Americans and examine the importance of race with respect to the following: beliefs and attitudes regarding RBM; the extent to which these beliefs and attitudes can be influenced by mass media messages about the relationship between race and genetics; and how beliefs and attitudes regarding RBM compare with those regarding PGM.  

METHODS: In order to answer these questions, this dissertation study used a nationally representative sample of self-identified non-Hispanic white, non-Hispanic black and Hispanic U.S. residents who participated in an online survey examining beliefs and attitudes regarding RBM and PGM, and the effect of a vignette experiment using mock news articles that varied in their messages about the relationship between race and genes on these beliefs and attitudes.  The survey assessed the following constructs using new measures designed for this dissertation study: RBM's effectiveness at the individual, clinical level; PGM's effectiveness at the individual, clinical level; preferences for using RBM; preferences for using PGM; and RBM's ability to address health inequalities in the U.S.  Means, frequencies, mean-difference tests and multiple regression were used to examine the effect of race and/or the vignette experiment on beliefs and attitudes regarding RBM and PGM.  

RESULTS: The results of this dissertation study show that the majority of white, black and Hispanic Americans equally agreed that RBM would not be clinically effective at the individual level, but the majority of all groups also equally agreed that they would prefer to use RBM if it was available.  More than forty percent of all respondents who did not believe RBM would be effective at the individual level, still preferred to use a race-specific treatment if it was available.  The three racial/ethnic groups examined in this study did diverge in belief in RBM's ability to reduce health inequalities.  Greater portions of the black and Hispanic respondents believed RBM would be effective at reducing health inequalities than white respondents.  Racial differences were also seen in the effect of the vignette experiment on RBM beliefs and attitudes.  While the vignette experiment had no effect on whites' beliefs and attitudes regarding RBM, vignettes that stated or implied a genetic basis to racial difference were associated with lower endorsement of RBM beliefs and attitudes among the black respondents.  Finally, the results indicated that both white and black Americans endorsed PGM's effectiveness at the individual level at greater levels than RBM's effectiveness, and both groups indicated greater preferences for using PGM than RBM.  However, while most white respondents indicated that they believed PGM would be effective at the individual level and that they would prefer to use PGM if it was available, nearly half of the black respondents did not believe PGM would be clinically effective, and 1 out of 4 black respondents did not prefer to use PGM.

CONCLUSIONS:  The results suggest that white, black and Hispanic Americans do not significantly differ in their beliefs and attitudes regarding the effectiveness of or preferences for using RBM.  This finding diverges from prior studies that showed racial differences in beliefs and attitudes regarding RBM.  The lack of racial difference may be due to a lack of familiarity with this concept, for the results also suggested that once respondents were exposed to varying mock news article messages about the relationship between race and genes, racial differences began to emerge. The results also showed discordance between belief in RBM's effectiveness and preferences for using RBM.  This finding suggests that there is still an incentive for the pharmaceutical and diagnostic testing industries to develop and market RBM even if there is generally low public opinion regarding RBM's effectiveness.  

PGM has been promoted by the biomedical industry as a potential solution to racial and ethnic health disparities both in the U.S. and globally, and RBM has been promoted as an interim form of PGM until it is further developed.  Despite noted clinical, social and ethical concerns regarding RBM specifically, proponents of RBM have focused on promoting the message of its potential to mitigate racial and ethnic health disparities.  The results from this study indicate that on the surface at least, this argument may in fact resonate with black and Hispanic Americans.  

In addition to being the first nationally representative study to examine potential racial differences in RBM beliefs and attitudes, this dissertation was also the first nationally representative study to examine potential racial differences in beliefs and attitudes regarding PGM.  Although the results clearly showed that all Americans endorsed the effectiveness of and preferences for using PGM at greater levels than RBM, whites were significantly more likely than blacks to believe PGM would be clinically effective and to indicate a preference for using PGM. Thus, while the merits of PGM may seem apparent to the clinical and academic communities, the results of this study indicate that there is not universal support for PGM among the public.  Cautious support for PGM from black respondents may reflect more general mistrust towards the medical community and new forms of health technologies.  Even though racial and ethnic minority populations seem open to RBM and PGM as potential strategies to address health inequalities, support for both could change as the public becomes more familiar with both concepts, whether through exposure to mass media messages, mass marketing of treatments and genetic testing, or through their clinical providers.  

The findings from this dissertation study significantly advance our knowledge of the American public's beliefs and attitudes regarding RBM and PGM, particularly with respect to racial differences, and should be considered by stakeholders in current and future debates surrounding efforts to develop and promote both.