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

Abstract

Background: Most biospecimens in the US are collected from non-Hispanic Whites, limiting the generalizability of findings. There is a need to increase participation in biobanking among ethnic and racial minorities. The purpose of this study was to use qualitative methods to identify factors that may influence Mexican-American individuals' willingness to participate in biobanking. Methods: We conducted 15 focus groups in three Texas cities with Mexican-American individuals, in both Spanish and English. Results: Lack of knowledge about medical research and biobanks, lack of information about the specifics of biobanking participation, lack of communication of the results, fear of pain or harm, and distrust of the healthcare system or health research were identified as barriers to biobanking participation. Facilitators to participation were altruism, safety, understanding biobanking procedures and purposes, perceived benefits to participation, and culturally appropriate recruitment strategies. Although Mexican-Americans living in Texas are willing to donate biospecimens for altruistic reasons, such as helping society or advancing science, they want more information about what biobanking entails. They want to be assured that participation will not cause them harm and that the research is conducted with good intentions. Conclusion: Results from this study can inform educational materials or interventions to increase Hispanic participation in biobanking.

Analysis of Racial/Ethnic Representation in Select Basic and Applied Cancer Research Studies

“…In this concern, several studies have been performed and many strategies have been suggested to increase participation of underrepresented populations 56 , 57 , 63 , 64 .…”

“…Although the reasons underlying these observations have not been fully understood, it seems that differences in tumor genomics, health care access, disease detection, quality of treatment and lack of participation in health research may contribute to these outcomes 17 , 26 , 50 , 56 – 64 . For example, it has been estimated that approximately 1 per each 20 adult cancer patients participate in clinical trials; this rate persist over the time 65 and is significant lower among racial/ethnic minority groups 57 , 65 .…”

Barriers and facilitators to dissemination and adoption of precision medicine among Hispanics/Latinos

“…Similar to Hamilton et al (2016), personal motivation was a facilitator because PM may offer individual benefits such as getting a genetic test to learn if a person carries a specific genetic trait and using the test to identify the most effective treatment [35]. The focus group participants also mentioned altruism as the main reason to support the dissemination and adoption of PM for societal and scientific benefit, even if they did not benefit themselves, a finding found in another study [55].…”

Racial/Ethnic Differences in Comprehension of Biospecimen Collection: a Nationwide University of Rochester Cancer Center NCI Community Oncology Research Program Study

“…Securing patients understanding about biospecimen collection [13,15] and providing adequate and specific information that biospecimen collection will not only promote participants' trust in the research but will also enhance their participation in biospecimen collection research [13,15]. Finally, providing adequate information and open conversations about biobanking can increase participation in biospecimen collection [15,45].…”