Awareness and interest in biospecimen donation for cancer research: views from gatekeepers and prospective participants in the Latino community

Rodriguez, Elisa M.; Torres, Essie; Erwin, Deborah O.

doi:10.1007/s12687-013-0152-2

Cited by 26 publications

(50 citation statements)

References 18 publications

(21 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The WNYCC conducted two separate biobanking pilot studies with nine Key Informant Interviews (KII) and three focus groups conducted in Niagara Falls, NY , and six KII and four focus groups with Hispanic participants in Buffalo, NY (Rodriguez et al 2013). Each of the four focus groups had two sources of data including: (1) ARS polling results and (2) focus group transcripts.…”

Section: Site-specific Methodsmentioning

confidence: 99%

“…Focus group transcripts were analyzed by two coders using an immersion crystallization approach (Borkan 1999). Complete descriptions of the methods and designs of these pilots are published elsewhere Rodriguez et al 2013), and key details in comparison with the other sites are listed in Table 1.…”

Section: Site-specific Methodsmentioning

confidence: 99%

“…Based on WNY participants' discussion, there was a lack of understanding among Puerto Rican participants, especially, regarding the differences between clinical, prevention, and biobanking research (Rodriguez et al 2013). Most had never donated any type of biospecimen or ever been asked to participate in a donation for research; therefore, many were unclear on the donation process and had questions with regard to eligibility criteria (i.e., healthy versus ill; having cancer versus having other illnesses; and if being a patient at the cancer center was required).…”

Section: Level Of Awarenessmentioning

confidence: 99%

“…Most had never donated any type of biospecimen or ever been asked to participate in a donation for research; therefore, many were unclear on the donation process and had questions with regard to eligibility criteria (i.e., healthy versus ill; having cancer versus having other illnesses; and if being a patient at the cancer center was required). The following quote best represents a recurrent theme in the focus groups with regard to participants' expectation of receiving individual cancer diagnoses or results upon participating in biospecimen donation: "My baby has cancer, my aunt died of cancer, my sister has cancer, my mother died of cancer, so for example, if I donate, I would like to know the level of development of cancer in me, for example" (Rodriguez et al 2013). None of the White participants in Niagara Falls had personal experience with biobanking or collection of biospecimens for research, and they were only familiar with blood banks and the process of donating blood or plasma for patient use.…”

Section: Level Of Awarenessmentioning

confidence: 99%

“…He warns scientists that this new science may be reductionistic, emphasizing the biological determinism of race in medicine, while ignoring the sociopolitical determinants of health disparities in minority and lower income populations. This interesting dialectic is an important consideration for researchers' efforts to respond to the National Institutes of Health (NIH 1993) mandates (as well as many other research organization imperatives) for adequate inclusion of underrepresented racial/ethnic minorities to clinical studies (Chen et al 2014), and biobanking resources Rodriguez et al 2013;Luque et al 2012). It is an underlying consideration of the academic investigators and community partners in the studies described herein.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

Engaging diverse populations about biospecimen donation for cancer research

et al. 2014

Self Cite

View full text Add to dashboard Cite

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.

show abstract

Section: Site-specific Methodsmentioning

confidence: 99%

Section: Site-specific Methodsmentioning

confidence: 99%

Section: Level Of Awarenessmentioning

confidence: 99%

Section: Level Of Awarenessmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Engaging diverse populations about biospecimen donation for cancer research

et al. 2014

Self Cite

View full text Add to dashboard Cite

show abstract

Factors associated with biomedical research participation within community‐based samples across 3 National Cancer Institute–designated cancer centers

Barrett

Rodriguez

Iachan

et al. 2020

Cancer

Self Cite

View full text Add to dashboard Cite

Background Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community‐based sample across 3 distinct geographic areas. Methods Three National Cancer Institute–designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. Results African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. Conclusions Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well‐established community partnerships and long‐standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute–designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system‐level and individual‐level barriers to participation in both clinical trials and biospecimen donation for research.

show abstract