Could the disclosure of individual health results hamper biobanking? Findings from a survey on potential donors screened for depression
Abstract Background: Research based on the use of biological material stored in biobanks together with health information and clinical data may produce new strategies for prevention, early detection, accurate diagnoses, and tailored treatments. A postal survey on the knowledge and attitude towards research biobanking was conducted among a sample of individuals previously recruited in urban primary care services in Rome (Italy), and screened for major depressive disorder (MDD) (SET-DEP project). The present study aims at exploring the attitude of these participants towards the potential future disclosure of individual health results when participating in research biobanking. Methods: The survey was conducted with a validated questionnaire on the knowledge and preferences about donation for research biobanks; self-perceived health was collected and The Satisfaction With Life Scale was administered. Means and percentages were compared across groups by using t test or ANOVA and chi-square test respectively. Results: Out of 416 subjects who underwent the screening for MDD, 51 (12.2%) subjects responded to the mail questionnaire. The large majority of respondents (42 subjects, >82%) declared they would agree to the potential use of their biological samples for biomedical research purposes only if no feedback results regarding health or predisposition to diseases would be given to them. The agreement towards research biobanking was not associated with satisfaction with life (ANOVA: p=0.82) or self-perceived health (chi-square test: p=0.98). Conclusions: It is widely recognized that willingness to donate diminishes when the research scenario raises moral, religious or political concerns. Nevertheless, other emerging concerns, more deeply linked to an individual psychosocial sphere, may also affect research biobanking. Our findings show a prevailing preference opposing the disclosure of individual health results not only among MDD positive screened but also – and even more – among MDD negative screened participants. This suggests that there might be relevant personal factors influencing people’s preferences with respect to the feedback of individual results in the case of psychiatric disorders such as depression. Moreover, these preferences do not seem to depend on the perceived heath status or subjective wellbeing of respondents.