Research based on existing clinical data and biospecimens: a systematic study of patients’ opinions

BACKGROUND: The aim of the present survey was to investigate newly discharged hospital patients’ opinions on secondary use of their hospital data and biospecimens within the context of health research in general and, more specifically, on genetic research, data sharing across borders and cooperation with the health industry. METHODS: A paper questionnaire was sent to 1049 consecutive newly discharged hospital patients. RESULTS: The vast majority of the respondents preferred to be informed (passive consent) or to receive no notification at all for secondary research on their health data and biospecimens (88% and 91% for data and biospecimens respectively). The rest wanted to be asked for active consent. The same trend applied for the other aspects also. 81% of respondents were positive towards genetic research without active consent. 95% were positive towards cooperating with the health industry, and 90% were positive towards data sharing. CONCLUSIONS: These results suggest that hospital patients generally are very positive to secondary research and support the concept of opting out rather than opting in. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12910-022-00799-4.