Strategies and Stakeholders: Minority Recruitment in Cancer Genetics Research

James, Rosalina; Yu, Joon Ho; Henrikson, Nora B.; Bowen, Deborah J.; Fullerton, Stephanie M.

doi:10.1159/000116878

Cited by 45 publications

(49 citation statements)

References 92 publications

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“…Without representation from diverse communities in studies, researchers cannot ensure the generalization/external validity of results (Lee et al 2012). Inclusion of and participation from racial/ethnic minority populations allows researchers to compare cancer associated genetic variants across populations, measure susceptibility, and determine associated cancer risk (James et al 2008;Burchard et al 2003). Furthermore, this need is also supported by at least three factors.…”

Section: Introductionmentioning

confidence: 99%

Engaging diverse populations about biospecimen donation for cancer research

et al. 2014

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Clinical research increasingly relies upon the availability of appropriate genetic materials; however, the proportion of biospecimens from racial/ethnic minority patients and healthy controls are underrepresented, which preclude equitable research across all patient groups for cancer treatment. National Cancer Institute-funded Community Network Program Centers in California, Florida, and New York collaborated with local community partners to conduct three independent formative research studies with diverse (African American, Asian American, Hispanic, and White) participants to explore their knowledge, attitudes, and beliefs about biobanking, and their experiences with the donation of biospecimens. Our findings demonstrated similarities in overall low knowledge and understanding about the use of biospecimens for research. This was exacerbated for nonEnglish speakers. Racial and ethnic groups differed with regard to a number of factors that are obstacles for participation, e.g., continuing medical mistrust (African Americans), lack of benefit (Hispanics), apprehension about the physical toll of donating (Vietnamese), usage of biospecimen for research (Hmong and Chinese), and suspicion of exploitation by corporate entities (Whites). However, participants uniformly reported general interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations. This interest was framed with a strong admonition that donations should be accompanied by transparency about study sponsorship and ownership, distribution and use of biospecimens, and study information that fit participants' backgrounds and experiences. This cross-cultural regional analysis offers significant insights into the similarities and variations in opinions and perceptions about biobanking and the collection of biospecimens for use in cancer research.

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Section: Introductionmentioning

confidence: 99%

Engaging diverse populations about biospecimen donation for cancer research

et al. 2014

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“…Minority ethnic groups are underrepresented in genomics research (James et al 2008). As of June 2009, 92 % of participants in genome wide association studies were of White ethnicity (Haga 2010).…”

Section: Introductionmentioning

confidence: 99%

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

et al. 2013

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Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including openended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of <$20,000. When the potential for personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p<0.001). Participants were Community Genet (2013) 4:469-482 DOI 10.1007 more interested in receiving personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p<0.001). The only characteristic consistently associated with interest in receiving personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly lowincome, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.

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“…In order to study the complex interactions between environmental factors and genes and to estimate the distribution of various alleles in specific subgroups, quality databases with sociodemographic, phenotypic, and genetic data are needed (Beskow et al 2001;Kendler et al 2011;James et al 2008;Merikangas and Risch 2003). This may be particularly true when studying substance use disorders where treatment avoidance, barriers within medical and legal systems, or other concerns may keep individuals from participating in genetic research.…”

Section: Introductionmentioning

confidence: 99%

“…As opposed to large nationally sponsored health initiatives or biobanks, little is known about gathering genetic samples from young adults participating in academic community-based epidemiologic studies of mental health and substance use, especially samples with a large number of minority participants (Alford et al 2011). Minorities are often underrepresented in genetic research samples (James et al 2008;USDHHS 1990).…”

Section: Introductionmentioning

confidence: 99%

“…Ethical oversight, language preference, clarity of communications (Kozlowski et al 2002), beliefs about benefits of participation (Halbert et al 2006), and trust between participants and investigators (Corbie-Smith et al 2002) should not be ignored. Contextual factors such as study design and recruitment efforts (Bhutta et al 2013;James et al 2008;Lanfear et al 2011;Patterson et al 2008), incentives (Bhatti et al 2009;Crider et al 2006;McCarty et al 2007), and the method of subject interaction (Etter et al 1998) can also influence participation rates. The type of sample and method of collection also appear to influence collection rates (Bhatti et al 2009;Wendler 2006).…”

Section: Introductionmentioning

confidence: 99%

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Genetic research participation in a young adult community sample

Storr

Eaton

et al. 2014

J Community Genet

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Opposed to large nationally sponsored health initiatives or biobanks, little is known about gathering genetic samples from young adults participating in academic community-based epidemiologic studies of mental health and substance use, especially samples with a large number of minority participants. This study describes our experience of establishing a genetic arm within a longitudinal study of a cohort of young adults (mean age 29, 75 % African American, 58 % female). In total, 75 % of those interviewed in the most recent wave donated a DNA sample (31.6 % blood and 68.4 % saliva) and over 90 % provided consent for storage and sharing. Current smokers were more likely to donate a sample than nonsmokers (adjusted odds ratio (aOR)=1.59, 95 % confidence interval (CI)=1.14, 2.22). The odds of obtaining a saliva sample were increased for those who were former cannabis smokers and who drank more regularly, but decreased among participants with less education and a history with drug use. Fewer minorities (aOR=0.37, 95 % CI= 0.18, 0.75; p=0.006) and cannabis users (aOR=0.46, 95 % CI =0.27, 0.77) consented to sharing their sample with other investigators. Findings also illustrate there are many study parameters that are important in planning biologic collection efforts. Building strong rapport and trust with subjects, minimizing the burden involved by the respondent to obtain a biological sample, offering a choice to provide blood or saliva, and offering an incentive will increase the likelihood of obtaining a sample and, importantly, increase the opportunity to store and share the sample for the future.

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Strategies and Stakeholders: Minority Recruitment in Cancer Genetics Research

Cited by 45 publications

References 92 publications

Engaging diverse populations about biospecimen donation for cancer research

Engaging diverse populations about biospecimen donation for cancer research

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

Genetic research participation in a young adult community sample

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