Community-based partnership to identify keys to biospecimen research participation.
Reported barriers to participation in biospecimen banking include unwillingness to undergo blood-draw procedures and concerns about confidentiality breaches, privacy, and discrimination. The study identified key factors and influential perspectives to address these barriers and inform methods to improve recruitment and research participation among racially diverse community. A mixed-methods, community-based participatory research orientation was used to collect formative findings to develop a pilot intervention. Methods included nine key informant interviews, three focus groups (n = 26), and 64 community surveys. Findings showed: (1) increased concern of exploitation by pharmaceutical company sponsor; (2) varied perceptions about monetary compensation for research participation; and (3) willingness to participate in a biospecimen banking study by more than 30% of the people in the community survey. Research participation and biospecimen donation may be influenced by who is sponsoring a study. Monetary incentives for study participation may be more important for African American than White participants.
Roswell Park Cancer Institute, Cancer Prevention and Population Sciences, Buffalo, NY, USA. Deborah.erwin@roswellpark.org
Deborah O
DO
Erwin
Kirsten
K
Moysich
Marc T
MT
Kiviniemi
Frances G
FG
Saad-Harfouche
Warren
W
Davis
Nikia
N
Clark-Hargrave
Gregory L
GL
Ciupak
Christine B
CB
Ambrosone
Charles
C
Walker
D035843:Biomedical Research; D003256:Community Participation; D055812:Community-Based Participatory Research; D003299:Cooperative Behavior; D005260:Female; D006801:Humans; D008297:Male; D009042:Motivation; D009369:Neoplasms / Q000175:diagnosis* / Q000628:therapy*; D010465:Perception