Enhancing Biospecimen Knowledge Among Health Care Providers and Representatives From Community Organizations

Abstract

In a personalized medicine environment, it is necessary to have access to a range of biospecimens to establish optimal plans for disease diagnosis and treatment for individual patients. Cancer research is especially dependent on biospecimens for determining ideal personalized treatment for patients. Unfortunately, the vast majority of biospecimens are collected from non-Hispanic white (NHW) individuals; thus, minority representation is lacking. This has negative implications for comprehensive cancer treatment. GMaP Region 6 implemented a series of biospecimen education seminars adapted from the Biospecimen and Biobanking module of an existing Cancer Education and Training Program. Regional GMaP partners participated in a train-the-trainer webinar to familiarize themselves with the training materials. Participants trained by the trainers completed pre- and post-tests to document changes in awareness, knowledge, and intention. Nine biospecimen education seminars were offered in 2013; 255 healthcare professionals and representatives from community organizations attended. Participants demonstrated a significant increase in knowledge, intention to donate samples, and intention to talk to patients about biospecimen sample donation. Representatives from community organizations had more improvement on knowledge scores than health care providers. Participation in a well-designed biospecimen education program may ameliorate some of the distrust of biomedical research experienced by racial/ethnic minorities and, in turn, increase needed minority representation in biospecimen collection.

Community Stakeholders’ Perspectives on Introducing Human Papillomavirus Vaccination and Biobanking Evidence-Based Programs Within Medically Underserved Communities: A Community-Engaged Approach

“…One important finding from this study was that knowledge gaps persist among community members and program coordinators on HPV vaccination and biobanking. This finding is consist with previous literature, 19 and may signal a need for further capacity-building trainings for practitioners on adapting and implementing EBP in culturally meaningful ways. The ability of program coordinators to analyze and interpret scientific evidence is pertinent to new medical technologies and programs being successfully disseminated and implemented into practice and community settings.…”

Enrollment and biospecimen collection in a multiethnic family cohort: the Northern California site of the Breast Cancer Family Registry

“…In order to understand the complex interactions between biologic, lifestyle, environmental, social, cultural, and community-level factors that underlie the disparities, research in diverse populations is critical [4,5]. Racial/ethnic minorities are under-represented in observational studies [5,6], intervention and clinical trials [7,8], and biorepositories [9,10], and it is often assumed that minorities are less willing to participate in biomedical research and provide biospecimens [11]. Multiple barriers precluding minority participation in biospecimen collection and genomics research have been identified [12][13][14][15].…”

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

“…Furthermore, it is important to note that responses observed in individual BANKS-SP-Knowledge items suggest that participants had limited knowledge about certain aspects of the biobanking process. Similarly, a recent study found that participants lacked knowledge about biobanking and biospecimens, particularly in items relating to participants' rights (Tham et al 2016). In our study, for example, 67.1 % of respondents believed that researchers will always contact people if their biospecimens show risk for disease.…”

“…Incorrect responses to individual items can help identify topic areas that can potentially be addressed in educational materials and community outreach efforts. In turn, increasing knowledge of biobanking could help increase biospecimen donations from minority individuals (Tham et al 2016).…”