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Survivor’s and family member’s perspectives on health data studies on sudden cardiac arrest

Erica Bronen*

As patients become momentarily debilitated or die, consent for data study in acute and critical care is complicated. Existing European Union standards and laws are of limited assistance, and there is a paucity of literature on the use of data from this vulnerable group. We investigated the perspectives of patients and next-of-kin on the collecting, storage, sharing, and use of genetic and health-related data for observational research to help create a patient-centered framework for responsible data research in the acute environment. Dutch SCA survivors who generously gave clinical and socioeconomic data as well as genetic materials to research. We also spoke with their relatives. Topics were based on ethical literature, and scenario-sketches were utilized to facilitate discussion of complicated themes. Sudden cardiac arrest survivors showed little understanding of their participation in health data research and the terms of their agreement. We discovered that people's preferences for disclosing clinically actionable genetic results can shift over time. Patients trusted researchers to handle data responsibly without regard for privacy or other dangers when data collection and use were limited to the medical field. There was no agreement on whether survivors should be approached expressly for postponed consent. If consent is sought, it should be sought a few months after the event, when cognitive abilities have returned. The necessity of obtaining proxy authorization for research using the data of deceased patients was a point of contention. However, there was widespread agreement that relatives should be informed of any potentially significant post-mortem genetic findings.