Using Mixed Methods to Examine Perceptions and Willingness to Participate in Bio-specimen Banking in Diverse Asian Americans.

BACKGROUND: On a large scale, bio-specimen banking offers researchers the ability to newly understand areas like community genetics and to apply new sampling technologies to housed samples. Understanding cultural differences in knowledge and perceptions of bio-specimen banking allows for addressing community concerns and facilitates dissemination of culturally relevant health education.
METHODS: Community-based participatory approaches (CBPA) provide opportunities to solicit community input and to build mechanisms for maximizing outcomes of potential interventions. As part of a larger CBPA project, Chinese, Korean, and Vietnamese community members participated in eight focus groups on bio-specimen banking. Demographics and qualitative text were analyzed.
RESULTS: The study results indicate that education and English proficiency were the most important predictors of knowledge of bio-specimen banking. Ethnic and age differences also were identified as predictors of knowledge in bivariate analyses. Participants discussed safety in bio-specimen sample collection procedures; processes of tissue removal, including spinal and blood draws; privacy protection; trust in healthcare providers; concerns about genetic research; importance of contributing to science; and family concerns.
CONCLUSION: The diversity of Asian American populations requires that, to increase participation in bio-specimen banking, understanding and addressing community concerns requires health education efforts that improve knowledge of innovations in sampling and cultural tailoring of health education messages. Promotion messages should highlight scientific benefits including possibilities for tailoring medical treatment and new diagnoses. Issues of health information privacy and stigma for communities at risk for certain diseases remain community worries.