Community-Based Partnership to Identify Keys to Biospecimen Research Participation

Erwin, Deborah O.; Moysich, Kirsten B.; Kiviniemi, Marc T.; Saad‐Harfouche, Frances G.; Davis, Warren; Clark-Hargrave, Nikia; Ciupak, Gregory; Ambrosone, Christine B.; Walker, Charles

doi:10.1007/s13187-012-0421-5

Cited by 33 publications

(37 citation statements)

References 14 publications

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“…The concepts of community benefit, relevance to the community, and transparency as related to biospecimen donation for cancer research have been cited as issues to consider by both African American and Hispanic community participants in formative research on awareness and interest to participate in biobanking studies [7, 17, 23]. …”

Section: Discussionmentioning

confidence: 99%

Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse)

et al. 2016

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Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.

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Section: Discussionmentioning

confidence: 99%

Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse)

et al. 2016

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“…23,25,31,47 The same was reported in several other qualitative studies. 37,40,48 Preferences for data sharing: data-sharing options. Despite positive attitudes towards data sharing, [40][41][42]49 most respondents in quantitative as well as in qualitative studies stressed the importance of being informed about data-sharing practices and privacy protection measures during the informed consent process.…”

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confidence: 99%

Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature

et al. 2015

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The success of biobank-based genomic research is widely dependent on people's willingness to donate their tissue. Thus, stakeholders' opinions should be considered in the development of best practice guidelines for research and recruiting participants. We systematically analyzed the empirical literature describing different stakeholders' views towards ethical questions with regard to type of consent, data sharing and return of incidental findings. Patients are more open to one-time general consent than the public. Only a small proportion desires recontact if the research aim changed. A broad consent model would prevent only a small proportion of patients from participating in research. Although professionals are concerned about a risk of reidentification, patients and the public support data sharing and find that the benefit of research outweighs the potential risk of reidentification. However, they desire detailed information about the privacy protection measures. Regarding the return of incidental findings, the public and professionals focus on clinically actionable results, whereas patients are interested in receiving as much information as possible. For professionals, concrete guidelines that help managing the return of incidental findings should be warranted. For this it would be helpful addressing the different categories -actionable, untreatable and inheritable diseases -upfront with patients and public. European Journal of Human Genetics (2015Genetics ( ) 23, 1607Genetics ( -1614 doi:10.1038/ejhg.2015; published online 4 March 2015 INTRODUCTIONTechnical advances in whole-genome sequencing enable the identification of genomic variations involved in the development of diseases, such as acquired mutations that are causally linked to cancer. 1,2 Improvements in disease prevention as well as diagnostic and therapeutic strategies may eventually lead to more precise, individually stratified health care. As most diseases are complex, which means that they are caused by multiple genomic factors, research is often based on large numbers of samples representing large numbers of individuals to arrive at statistically significant conclusions. In addition, genetic susceptibility alone is not sufficient to induce a complex disease; the causes also include different lifestyle and environmental factors. Therefore, to study complex diseases the interplay of all of these factors has to be considered. An efficient tool to achieve this is the creation of biobanks. Biobanks are defined as organized collections of human biological specimens comprised of cells, tissues, blood or DNA, which could be linked to clinical data and detailed individual lifestyle. Biobanks vary with respect to types and sources of samples and size, as well as research focus. Biobanks can be disease-specific or population-based, ranging from small collections to large-scale repositories. [3][4][5][6][7] Linking biological materials to personal data for enabling biobankbased genomic research raises several ethical questions that are currently debated. Th...

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“…7,8,[45][46][47][48][49][50][51] CBPR best practices suggest that including scientists and clinicians from respected health institutions in community partnerships builds community trust and may help to increase community involvement in biobanking. 52 Knowledge about biospecimen research plays an important role in Chinese American willingness to participate in biospecimen research as indicated by our bivariate results. Only 50%of study participants had heard about biospecimen research and the majority could not correctly identify the use of biospecimens in medical research.…”

Section: Discussionmentioning

confidence: 77%

Factors Associated with Willingness to Participate in Biospecimen Research Among Chinese Americans

Gao

Grace

Tan

et al. 2014

Biopreservation and Biobanking

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A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research among other Asian American groups.

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Community-Based Partnership to Identify Keys to Biospecimen Research Participation

Cited by 33 publications

References 14 publications

Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse)

Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse)

Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature

Factors Associated with Willingness to Participate in Biospecimen Research Among Chinese Americans

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