Knowledge and Willingness to Provide Research Biospecimens Among Foreign-Born Latinos Using Safety-Net Clinics

Abstract

Background Latinos tend to be under-represented in cancer research and in bio-repositories. Methods We conducted a Spanish-language, interviewer-administered cross-sectional survey of 331 foreign-born Latinos from Central and South America attending safety-net clinics in order to describe factors associated with knowledge about and intention to provide bio-specimens for research purposes. We used logistic regression and multiple imputation methods to evaluate associations between socio-cultural measures, medical trust, demographics, as well as knowledge about and intentions to provide bio-specimens. Results Almost half (47%) of respondents knew what bio-specimens were, and 67% said that they would provide a specimen after being given information about what this involved; this increased to 72% among those with prior knowledge. Controlling for covariates, Latinos with a high school education and above were more likely to know what a bio-specimen was and to say they would provide bio-specimens than were those with lower levels of education (adjusted OR [aOR] 2.85, 95% CI 1.37-5.96; and 3.49, 95% CI 1.41-8.63, p <.01, respectively). Those with greater social integration were more likely to know about bio-specimens than those with less integration (aOR 2.54, 95% CI 1.45-4.46, p=0.001). Higher endorsement of family values was independently associated with intent to give bio-specimens (aOR 1.11, 95% CI 1.02-1.20, p=0.017 per five-point increase in “familism” score). Medical mistrust was not related to intentions to provide specimens. Conclusions Our results suggest that interventions to increase willingness to provide bio-specimens could leverage trusted clinics or social networks and should consider individuals’ education and socio-cultural perspectives.

Community Perceptions of Biobanking Participation: A Qualitative Study among Mexican-Americans in Three Texas Cities

“…Although studies that include a subset of Hispanic participants have explored the factors that influence biobanking participation [5,10-14], few studies have included an exclusively Hispanic sample [11,12]. Hispanics note that altruistic reasons, such as benefiting science or society as a whole, play a major role in their decision to donate biospecimens [10,12-14].…”

Development and validation of the biobanking attitudes and knowledge survey-Spanish (BANKS-SP)

“…Two of these qualitative studies found low awareness of biobanking initiatives and uncertainty about the process (Luque et al 2012;Rodriguez et al 2013). Quantitative studies which have been conducted with Hispanic participants have explored the influence of acculturation on willingness and donation of biospecimens for research (Lopez et al 2014), misconceptions about receiving personal health information as part of participation (Knerr and Ceballos 2015), and factors associated with prior knowledge of biospecimen research (Loffredo et al 2013). However, published research is hampered by a lack of valid and reliable quantitative surveys in Spanish that evaluate constructs which can predict biospecimen donation or evaluate interventions aimed at improving understanding of biospecimen research.…”

Factors that Affect Willingness to Donate Blood for the Purpose of Biospecimen Research in the Korean American Community

“…Similar findings have also been found in other minority groups including Chinese and Hispanics. 15,20 Older participants may experience more medical issues than do young participants, thereby producing a higher immediate need for biospecimen research. Older Chinese participants have also been found to be more willing to donate to research if it benefits future generations.…”

“…13,14 Past research suggests that a number of demographic factors, including older age and higher education, are associated with greater willingness to donate blood for research in the United States. 9,10,15 Studies examining the effect of acculturation, including the number of years lived in the United States, place of birth, and English-speaking proficiency, and healthcare access and barriers on willingness to donate blood for research in other minority groups, have had conflicting results. [15][16][17] While prior studies have examined participants' motivation to contribute to biospecimen research, [8][9][10] there has not been a thorough examination of this motivation with respect to individuals of Korean descent.…”

“…9,10,15 Studies examining the effect of acculturation, including the number of years lived in the United States, place of birth, and English-speaking proficiency, and healthcare access and barriers on willingness to donate blood for research in other minority groups, have had conflicting results. [15][16][17] While prior studies have examined participants' motivation to contribute to biospecimen research, [8][9][10] there has not been a thorough examination of this motivation with respect to individuals of Korean descent. The purpose of this study is to examine attitudes toward biospecimen research as a mediator of the relationship between demographic and healthcare access factors and willingness to donate blood for the purpose of research among individuals of Korean heritage.…”