African Americans’ Responses to Genetic Explanations of Lung Cancer Disparities and Their Willingness to Participate in Clinical Genetics Research

Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland 20892-2073, USA.
Genetics in medicine: official journal of the American College of Medical Genetics (Impact Factor: 7.33). 08/2010; 12(8):496-502. DOI: 10.1097/GIM.0b013e3181e5e513
Source: PubMed


To assess whether reactions to genetic explanations for disparities in lung cancer incidence among family members of African American patients with lung cancer are associated with willingness to participate in clinical genetics research.
Data are reported for 67 self-identified African Americans aged 18 to 55 years who completed a telephone survey assessing reactions to explanations (i.e., genetics, toxin exposure, menthol cigarettes, and race-related stress) for lung cancer disparities. Majority were female (70%), current smokers (57%), and patients' biological relatives (70%).
Family members rated the four explanations similarly, each as believable, fair, and not too worrisome. Participants also indicated a high level of willingness to participate in genetics research (M = 4.1 +/- 1.0; scale: 1-5). Endorsements of genetics explanations for disparities as believable and fair, and toxin exposure as believable were associated significantly with willingness to participate in genetics research.
These results suggest that strategies to encourage African Americans' participation in genetics research would do well to inform potential participants of how their involvement might be used to better understand important environmental factors that affect health disparities.

Download full-text


Available from: Laura M Koehly, May 14, 2014
  • [Show abstract] [Hide abstract]
    ABSTRACT: For over two decades, scholars in the humanities and social sciences have attended warily and thoughtfully to the growing influence of biological and especially genetics-based explanations of human behavior. Concern about genetic determinism has formed a focal point of this attention, because it was presumed to provide a lynchpin for discriminatory effects arising from genetics technologies. Substantial empirical research has now demonstrated that genetic determinism is in fact linked to discriminatory attitudes including prejudice, Social Dominance Orientation, sexism, and racism. Fortunately, however, the research has also indicated that most lay people’s deployment of genetic determinism is both limited and strategic, primarily serving self-interests such as protecting valued behaviors (which are not health conducive) or avoiding blame. The disjunction between predictions based on existing social theories of discourse and empirical research on individual-level practices highlights the need for a theoretical integration of biological biases, individual actions, and social structures in future social theories, especially theories about health behaviors, science studies, and public understanding of science.
    No preview · Article · Jul 2011 · Sociology Compass
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Background In an ongoing clinical trial, the genetic and environmental risk assessment (GERA) blood test offers subjects information about personal colorectal cancer risk through measurement of two novel low-to-moderate risk factors. We sought to examine predictors of uptake of the GERA blood test among participants randomized to the Intervention arm. Methods Primary care patients aged 50 to 74 years eligible for colorectal cancer screening are randomized to receive a mailed stool blood test kit to complete at home (Control) or to the control condition plus an in-office blood test called GERA that includes assessment of red blood cell folate and DNA-testing for two MTHFR (methylenetetrahydrofolate reductase) single nucleotide polymorphisms (SNPs) (Intervention). For the present study, baseline survey data are examined in participants randomized to the Intervention. Results The first 351 intervention participants (161 African American/190 white) were identified. Overall, 249 (70.9%) completed GERA testing. Predictors of GERA uptake included race (African American race, odds ratio (OR) 0.51 (0.29 to 0.87)), and being more knowledgeable about GERA and colorectal cancer screening (OR 1.09 (1.01 to 1.18)). Being married (OR 1.81 (1.09 to 3.00)) was also significant in the multivariable model. Conclusions Participant uptake of GERA testing was high. GERA uptake varied, however, according to socio-demographic background and knowledge.
    Full-text · Article · Nov 2012 · Genome Medicine
  • [Show abstract] [Hide abstract]
    ABSTRACT: Public understanding of genetic concepts and associated ethical and policy issues can enable informed deliberation and decision-making. Effective strategies for increasing public understanding involve providing forums incorporating the unique perspectives and attitudes of the public, while allowing opportunities to learn first-hand from scientists about genome research and related applications. Through a partnership between the Duke Institute for Genome Sciences & Policy (IGSP) and the Museum of Life and Science in Durham, NC, we developed and piloted a program aimed to bridge the concepts of formal (public school) and informal (community-based science museum) science learning with the experiential context of family and participatory learning. Called Genome Diner, we piloted the program with 40 genetic/genomic researchers, 76 middle school students and their parents (n = 83) from Durham, NC. Program impact was assessed via pre/post surveys for each participant group. Following participation, parents were significantly more likely to correctly interpret the implications of a genome research finding, and both students and parents indicated higher interest in research as well as higher confidence in accessing and understanding genome research. Genetic literacy of parents and students was not affected by participation in the program, likely due to the relatively high knowledge scores pre-Diner: 88.3 % and 78.5 %, respectively. The interactive format of Genome Diner provided an opportunity for students and parents to explore and discuss interests and issues about genomic research alongside genome scientists, positively influencing attitudes toward genetic research and researchers themselves. These interactions are critical for maintaining public interest and knowledge about genomic research and applications.
    No preview · Article · Feb 2013 · Journal of Genetic Counseling
Show more