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Patients' views on HCC biospecimen research: Understanding the role of race and culture through interviews
Patricia D Jones1,2, Ryan C Schooley3, Sophia Hon3
1Department of Medicine, Division of Digestive Health and Liver Diseases, University of Miami Miller School of Medicine, Miami, Florida, USA.
Background:
HCC is a leading cause of cancer-related mortality; there are significant racial and ethnic disparities in HCC risk and survival. Our knowledge regarding whether molecular and genetic factors contribute to these observed differences is limited by scarcity of biospecimens, which are especially scarce in minority populations. Because biospecimens are not needed for HCC diagnosis or treatment, patients are less likely to provide biospecimens solely for research purposes.
Methods:
We identified participants, n = 32, from an ongoing prospective cohort study. Using semi-structured interviews, we examined perceptions of providing biospecimens for research to identify factors that motivate and hinder their willingness to donate.
Results:
Directed content analysis resulted in 6 themes, including reported experiences of (1) support or suspicion in donating biospecimens; (2) desire to help others or themselves; (3) inconvenience, discomfort, and concerns about privacy or recovery as hindrances to donating; (4) recommendations for health care researchers; (5) preferences for biospecimen donation; and (6) the influence of race, culture, and religion in donating biospecimens. Patients reported being least willing to donate specimens that required more invasive procedures and recovery, namely, liver tissue. Patients reported being more likely to donate if the data collection was convenient, resulted from discarded tissue, or was instituted as part of a broad opt-in consent approach, with assurances as to confidentiality and prosocial benefit. Participants expressed mixed views about whether race and culture influence people's willingness to donate biospecimens.
Conclusions:
Specific recommendations to increase the likelihood of donation include providing patients with educational materials addressing the benefits of donation and the concerns about confidentiality and data usage, making donation convenient, and adopting a broad consent bio-banking policy.
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