American Indian/Alaska Native Willingness to Provide Biological Samples for Research Purposes

Filippi, Melissa K.; Young, Kristin L.; Nazir, Niaman; Williams, Chandler; Brown, Travis; Choi, Won Sik; Greiner, K. Allen; Daley, Christine Makosky

doi:10.1007/s10900-011-9502-3

Cited by 11 publications

(8 citation statements)

References 20 publications

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“…In addition, Hughes et al [11] found that cultural beliefs hindered African American women from participating in genetic risk assessment studies, while Corbie-Smith et al [12] reported mistrust of the medical communities as a barrier for these populations to participate. Contrary to these studies, however, Filippi et al [13] and Wendler et al [14] found no statistical significant differences in willingness to participate in health research between different ethnic groups.…”

Section: Introductionmentioning

confidence: 91%

How acceptable is it for HIV positive African, Caribbean and Black women to provide breast milk/fluid samples for research purposes?

et al. 2017

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BackgroundThe African, Caribbean and Black communities have been found to be reluctant to participate in health research in North America. This is partly attributed to historical experiences as well as their cultural beliefs. Cultural beliefs about the uses of breast milk/fluids could further hinder the participation of African, Caribbean, and Black communities in research involving the collection of breast milk/fluids samples.MethodsWe conducted 17 in-depth interviews and three group interviews (n = 10) with HIV+ African, Caribbean and Black women living in Ontario, Canada to explore their cultural beliefs about breast milk/fluids and their acceptance of participating in research that involves the provision of breast fluid samples.Study designQualitative study involving in-depth interviews.ResultsOur respondents believed that breast milk/fluids should be used for infant feeding and for curative purposes for a variety of children’s health ailments as well as ailments experienced by other family members. The cultural belief that breast milk/fluids could be used to bewitch the baby and mother and the perception that it is intrusive (equating breast milk/fluids research to DNA testing), could prevent African, Caribbean and Black women from participating in research involving the collection of breast milk/fluids. Despite these fears, some respondents expressed that they would participate if the research results would benefit them directly, for example, by finding a cure for HIV, enabling HIV+ mothers to breastfeed, or contributing to developing new drugs or vaccines for HIV. Women’s recommendations to facilitate successful recruitment included giving incentives to participants, and employing a recruiter who was trustworthy, informed, and culturally sensitive.ConclusionCultural beliefs could present barriers to recruitment and participation of Africa, Caribbean and Black communities in health research involving breast milk/fluid samples. Successful recruitment for future studies would necessitate researchers to be culturally aware of the beliefs held by African, Caribbean and Black women, to build trust, and use an appropriate recruiter. While the findings relate to breast milk/fluids, the suggested recommendations for facilitating recruitment of research participants from these communities may be useful to consider when recruiting ethnically and culturally similar participants for research involving biological samples.Electronic supplementary materialThe online version of this article (doi:10.1186/s13104-016-2326-6) contains supplementary material, which is available to authorized users.

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Section: Introductionmentioning

confidence: 91%

How acceptable is it for HIV positive African, Caribbean and Black women to provide breast milk/fluid samples for research purposes?

et al. 2017

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“…Existing literature on the perspectives of Indigenous peoples in the U.S. and Canada indicates that the acceptability of research for these groups is contingent upon factors related to these components and principles of data management (James et al, 2014; Garrison et al, 2019). Issues of concern to Indigenous communities include: the types of data collected and how and from whom it is collected (Angal et al, 2016); the role of the community in the interpretation and analysis of data (Harding et al, 2012); the measures taken to maintain the security of data and the potential for loss of confidentiality (Sprague et al, 2013); the conditions under which biospecimens and other data types are stored (Hiratsuka et al, 2012a; Hiratsuka et al, 2012b; Haring et al, 2018); the terms of specimen withdrawal and disposal (Hiratsuka et al, 2012a; Hiratsuka et al, 2012b); with whom, for what purposes, and with whose permission data can be shared (Filippi et al, 2012); processes for returning results and progress reports to individuals participating in research (Hiratsuka et al, 2012a; Hiratsuka et al, 2012b); and, community involvement in the review and approval of dissemination products (Buchwald et al, 2006; Dirks et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review

et al. 2019

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Background: Multiple factors, including experiences with unethical research practices, have made some Indigenous groups in the United States and Canada reticent to participate in potentially beneficial health-related research. Yet, Indigenous peoples have also expressed a willingness to participate in research when certain conditions related to the components of data management—including data collection, analysis, security and storage, sharing, dissemination, and withdrawal—are met. A scoping review was conducted to better understand the terms of data management employed in health-related research involving Indigenous communities in the United States and Canada. Methods: PubMed, Embase, PsychINFO, and Web of Science were searched using terms related to the populations and topics of interest. Results were screened and articles deemed eligible for inclusion were extracted for content on data management, community engagement, and community-level research governance. Results: The search strategy returned 734 articles. 31 total articles were extracted, of which nine contained in-depth information on data management and underwent detailed extraction. All nine articles reported the development and implementation of data management tools, including research ethics codes, data-sharing agreements, and biobank access policies.These articles reported that communities were involved in activities and decisions related to data collection (n=7), data analysis (n=5), data-sharing (n=9), dissemination (n=7), withdrawal (n=4), and development of data management tools (n=9). The articles also reported that communities had full or shared ownership of (n=5), control over (n=9), access to (n=1), and possession of data (n=5).All nine articles discussed the role of community engagement in research and community-level research governance as means for aligning the terms of data management with the values, needs, and interests of communities. Conclusions: There is need for more research and improved reporting on data management in health-related research involving Indigenous peoples in the United States and Canada. Findings from this review can provide guidance for the identification of data management terms and practices that may be acceptable to Indigenous communities considering participation in health-related research.

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“…Spero Manson and Candace Fleming from UCD. Although the purpose of the Forum was to obtain feedback about sharing health research results, a review of the literature and past research communication with community members suggested the inclusion of additional critical discussion topics, including research mistrust due to past unethical research practices and contemporary AN/AI community level research review practices (Bowekaty, 2002; Bromley, Mikesell, Jones, & Khodyakov, 2015; Filippi et al, 2012; Gottlieb, 2013; Guillemin et al, 2016; Hiratsuka, Brown, Hoeft, & Dillard, 2012). To address the issue of research mistrust in AN/AI communities and to foster open, reflective discussion, an important starting point for the Forum was to acknowledge the history of unethical and harmful research in the AN/AI community.…”

Section: Introductionmentioning

confidence: 99%

Approach and Methods of the 2016 Alaska Native Research Forum

Hiratsuka¹,

Avey²,

Beans³

et al. 2018

AIANMHR

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Southcentral Foundation, a tribal health organization serving Alaska Native and American Indian (AN/AI) people in southcentral Alaska, convened the Alaska Native Health Research Forum (Forum) for AN/AI people in May 2016. The purpose of the Forum was to obtain AN/AI community member feedback about sharing health research results. This article describes the funding mechanism that provided resources for the Forum and other factors that were considered when designing the Forum. This is followed by a description of how attendees were invited, the audience response system, and process used to collect quantitative data on participants and qualitative feedback from small group discussions with Forum attendees. Finally, we describe the quantitative and qualitative data analysis processes used to evaluate responses.

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American Indian/Alaska Native Willingness to Provide Biological Samples for Research Purposes

Cited by 11 publications

References 20 publications

How acceptable is it for HIV positive African, Caribbean and Black women to provide breast milk/fluid samples for research purposes?

How acceptable is it for HIV positive African, Caribbean and Black women to provide breast milk/fluid samples for research purposes?

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review

Approach and Methods of the 2016 Alaska Native Research Forum

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