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      Conducting Precision Medicine Research with African Americans

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          Abstract

          Importance

          Precision medicine is an approach to detecting, treating, and managing disease that is based on individual variation in genetic, environmental, and lifestyle factors. Precision medicine is expected to reduce health disparities, but this will be possible only if studies have adequate representation of racial minorities.

          Objective

          It is critical to anticipate the rates at which individuals from diverse populations are likely to participate in precision medicine studies as research initiatives are being developed. We evaluated the likelihood of participating in a clinical study for precision medicine.

          Design, Setting, Participants

          Observational study conducted between October 2010 and February 2011 in a national sample of African Americans.

          Main Outcome Measure

          Intentions to participate in a government sponsored study that involves providing a biospecimen and generates data that could be shared with other researchers to conduct future studies.

          Results

          One third of respondents would participate in a clinical study for precision medicine. Only gender had a significant independent association with participation intentions. Men had a 1.86 (95% CI = 1.11, 3.12, p = 0.02) increased likelihood of participating in a precision medicine study compared to women in the model that included overall barriers and facilitators. In the model with specific participation barriers, distrust was associated with a reduced likelihood of participating in the research described in the vignette (OR = 0.57, 95% CI = 0.34, 0.96, p = 0.04).

          Conclusion and Relevance

          African Americans may have low enrollment in PMI research. As PMI research is implemented, extensive efforts will be needed to ensure adequate representation. Additional research is needed to identify optimal ways of ethically describing precision medicine studies to ensure sufficient recruitment of racial minorities.

          Related collections

          Most cited references 19

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          A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

          To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities' research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies.
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            Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review.

            Racial and ethnic minorities, older adults, rural residents, and individuals of low socioeconomic status are underrepresented among participants in cancer-related trials. The authors conducted a systematic review to determine the barriers to participation of underrepresented populations in cancer-related trials. Their search included English-language publications that reported original data on the recruitment of underrepresented groups to cancer treatment or prevention trials between 1966 and December 2005 in multiple electronic databases. They also hand-searched titles in 34 journals from January 2003 to December 2005 and they examined reference lists for eligible articles. Titles and abstracts were reviewed to identify relevant studies. Data on barriers to participation were synthesized both qualitatively and based on statistically significant associations with trial enrollment. Of 5257 studies that were cited, 65 studies were eligible for inclusion in the current analysis, including 46 studies on recruitment into cancer therapeutic trials, 15 studies on recruitment into prevention trials, and 4 studies on recruitment into both prevention and treatment trials. Numerous factors were reported as barriers to participation in cancer-related trials. However, only 20 of the studies reported statistically significant associations between hypothesized barriers and enrollment. The available evidence had limitations in quality regarding representativeness, justification of study methods, the reliability and validity of data-collection methods, potential for bias, and data analysis. The results indicated that underrepresented populations face numerous barriers to participation in cancer-related trials. The current systematic review highlighting the literature on recruitment of underrepresented populations to cancer trials and may be used as the evidence base toward developing an agenda for etiologic and intervention research to reduce the disparities in participation in cancer-related trials.
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              Attitudes and beliefs of African Americans toward participation in medical research.

              To describe barriers to participation of African Americans in research. Focus group interviews conducted in 1997. Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups. African-American patients' attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research. African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                21 July 2016
                2016
                : 11
                : 7
                Affiliations
                [1 ]Department of Psychiatry and Behavioral Sciences, Medical University of South Carolina, Charleston, SC, United States of America
                [2 ]Hollings Cancer Center, Medical University of South Carolina, Charleston, SC, United States of America
                [3 ]Ralph H. Johnson Veteran’s Administration Medical Center, Charleston, SC, United States of America
                [4 ]Department of Epidemiology, Columbia University, Mailman School of Public Health, New York, NY, United States of America
                [5 ]Moffitt Cancer Center, Tampa, FL, United States of America
                Duke University, UNITED STATES
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Conceived and designed the experiments: CHH. Analyzed the data: CHH. Wrote the paper: CHH JM SV LR MJ. Conceived and designed the study: CHH. Performed data analysis: CHH. Assisted with data interpretation, manuscript drafting, and finalization of the manuscript draft: JM SV. Assisted with manuscript drafting and finalization of manuscript: LJR MJ.

                Article
                PONE-D-15-34416
                10.1371/journal.pone.0154850
                4956119
                27441706

                This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 public domain dedication.

                Page count
                Figures: 0, Tables: 0, Pages: 10
                Product
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/100000048, American Cancer Society;
                Award ID: RSG-11-268-01-CPPB
                Award Recipient :
                Funded by: funder-id http://dx.doi.org/10.13039/100000051, National Human Genome Research Institute;
                Award ID: R01HG004346
                Award Recipient : Chanita Halbert
                Funded by: funder-id http://dx.doi.org/10.13039/100000054, National Cancer Institute;
                Award ID: UG1CA189848
                Award Recipient : Chanita Halbert
                Funded by: funder-id http://dx.doi.org/10.13039/100006108, National Center for Advancing Translational Sciences;
                Award ID: 5UL1TR000062-05
                Award Recipient : Chanita Halbert
                This research was supported by National Human Genome Research Institute grant #R01HG004346, grant #RSG-11-268-01-CPPB from the American Cancer Society, grant #UG1CA189848 from the National Cancer Institute, and grant #UL1TR001450 from the National Center for Advancing Translational Science. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                People and places
                Population groupings
                Ethnicities
                African Americans
                Biology and Life Sciences
                Genetics
                Cancer Genetics
                Medicine and Health Sciences
                Biology and Life Sciences
                Genetics
                Genomics
                Genomic Medicine
                Medicine and Health Sciences
                Clinical Genetics
                Research and Analysis Methods
                Research Design
                Survey Research
                Surveys
                Medicine and Health Sciences
                Pharmacology
                Drug Research and Development
                Medicine and Health Sciences
                Oncology
                Cancer Treatment
                Custom metadata
                Data ara available from the Inter-university Consortium for Political and Social Research (ICPSR) Justin Noble, Acquisitions Manager Inter-university Consortium for Political and Social Research. University of Michigan, 330 Packard St., Ann Arbor, MI 48104, 734.615.8987.

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