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

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. (C) 2016 S. Karger AG, Basel