Asking the Right Questions: Views on Genetic Variation Research Among Black and White Research Participants

Bussey‐Jones, Jada; Henderson, Gail E.; Garrett, Joanne M.; Moloney, Mairéad; Blumenthal, Connie; Corbie-Smith, Giselle

doi:10.1007/s11606-008-0883-7

Cited by 20 publications

(10 citation statements)

References 23 publications

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“…While our study extends previous work on African American participation in medical research 14,15,40 by identifying factors that individuals may consider when making decisions about participating in cancer research among an urban sample that had not previously participated in genetics research, it is important to consider some possible limitations such as the small sample and the methods we used to recruit participants. Even though qualitative studies typically enroll a smaller number of participants from a single geographic area using self-referrals, it is important to note that these features may limit the generalizability of our findings.…”

Section: Discussionmentioning

confidence: 79%

“…Similar results were found in a cohort of individuals who had already provided consent to participate in genetic epidemiology research; participants had generally positive attitudes and beliefs about genetics research, but when prompted, some expressed concerns about these types of studies. 14 This process may reflect how individuals are likely to weigh the risks and benefits of participating in cancer genetics research and should be expected and encouraged. Future research is needed to identify the most effective strategies for obtaining informed consent for cancer genetics research among African Americans.…”

Section: Discussionmentioning

confidence: 99%

“…For instance, Bussey-Jones et al found that subjects who had already enrolled in a cancer genetic epidemiology study were unlikely to spontaneously identify negative outcomes of participation; these concerns emerged only when specifically prompted. 14 In another study with this same cohort, Henderson et al found that most participants had positive views about genetics research and were willing to participate in future research. 15 Recent research has shown that positive attitudes and strong intentions may not translate into similar rates of participation in this cohort and trust is important to the donation of samples for future studies.…”

Section: Introductionmentioning

confidence: 93%

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Understanding Participation by African Americans in Cancer Genetics Research

McDonald

Barg

Weathers

et al. 2012

Journal of the National Medical Association

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Purpose Understanding genetic factors that contribute to racial differences in cancer outcomes may reduce racial disparities in cancer morbidity and mortality. Achieving this goal will be limited by low rates of African American participation in cancer genetics research (CGR). Method We conducted a qualitative study with African American adults (n=91) to understand attitudes about participating in CGR and to identify factors that are considered when making a decision about participating in this type of research. Results Participants would consider the potential benefits to themselves, family members, and their community when making a decision to participate in CGR. However, concerns about exploitation, distrust of researchers, and investigators’ motives were also important to participation decisions. Individuals would also consider who has access to their personal information and what would happen to these data. Side effects, logistical issues, and the potential to gain knowledge about health issues were also described as important factors in decision-making. Conclusion African Americans may consider a number of ethical, legal, and social issues when making a decision to participate in CGR. These issues should be addressed as part of recruitment efforts.

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Section: Discussionmentioning

confidence: 79%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 93%

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Understanding Participation by African Americans in Cancer Genetics Research

McDonald

Barg

Weathers

et al. 2012

Journal of the National Medical Association

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“…With genomic and personalized medicine we may someday move beyond race and ethnicity as a surrogate for genetic variation in health care. To move beyond race, will require health care providers to have the skills to communicate to their patients the complex concepts of population groups and human genetic variation [ 46 ]. Currently however, race and ethnicity serve as proxies for factors we are only beginning to understand about the relationships between genetic variation and health, thus in this interim, we need to deepen our understanding of health care providers understanding of race and genetic variation and use of race in their decision making.…”

Section: Discussionmentioning

confidence: 99%

Physicians’ knowledge, beliefs, and use of race and human genetic variation: new measures and insights

Bonham

Sellers

Woolford

2014

BMC Health Serv Res

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BackgroundUnderstanding physician perspectives on the intersection of race and genomics in clinical decision making is critical as personalized medicine and genomics become more integrated in health care services. There is a paucity of literature in the United States of America (USA) and globally regarding how health care providers understand and use information about race, ethnicity and genetic variation in their clinical decision making. This paper describes the development of three scales related to addressing this gap in the literature: the Bonham and Sellers Genetic Variation Knowledge Assessment Index--GKAI, Health Professionals Beliefs about Race—HPBR, and Racial Attributes in Clinical Evaluation—RACE scales.MethodsA cross-sectional, web survey of a national random sample of general internists in the USA (N = 787) was conducted. Confirmatory factor analysis was used to assess the construct validity of the scales. Scale items were developed through focus groups, cognitive interviews, expert advisory panels, and exploratory factor analysis of pilot data.ResultsGKAI was measured as a count of correct answers (Mean = 3.28 SD = 1.17). HPBR yielded two domains: beliefs about race as a biological phenomenon (HPBR-BD, alpha = .69, 4 items) and beliefs about the clinical value of race and genetic variation for understanding risk for disease (HPBR-CD alpha = .61, 3 items). RACE yielded one factor (alpha = .86, 7 items).ConclusionsGKAI is a timely knowledge scale that can be used to assess health professional knowledge of race and human genetic variation. HPBR is a promising new tool for assessing health professionals’ beliefs about the role of race and its relationship with human genetic variation in clinical practice. RACE offers a valid and reliable tool for assessing explicit use of racial attributes in clinical decision making.

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“…1,8–13 Indeed, research has indicated that African Americans who have negative perceptions of genetics research also report less interest in genetics research and testing. 14,15 However, these suggestions have not always been substantiated by empirical evidence.…”

Section: Introductionmentioning

confidence: 99%

African Americans' responses to genetic explanations of lung cancer disparities and their willingness to participate in clinical genetics research

White

Koehly

Omogbehin

et al. 2010

Genetics in Medicine

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Purpose 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. Methods Data are reported for 67 self-identified African Americans ages 18 to 55 years who completed a telephone survey assessing reactions to explanations (i.e., genetics, toxin exposure, menthol cigarettes, race-related stress) for lung cancer disparities. Majority was female (70%), current smokers (57%), and patients’ biological relatives (70%). Results 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. Conclusion 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.

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Asking the Right Questions: Views on Genetic Variation Research Among Black and White Research Participants

Cited by 20 publications

References 23 publications

Understanding Participation by African Americans in Cancer Genetics Research

Understanding Participation by African Americans in Cancer Genetics Research

Physicians’ knowledge, beliefs, and use of race and human genetic variation: new measures and insights

African Americans' responses to genetic explanations of lung cancer disparities and their willingness to participate in clinical genetics research

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