Thematic analysis of cardiac care patients' explanations for declining contribution to a genomic research-based biobank

Abstract

Background Health care delivery systems increasingly ask patients to contribute biological samples for future genomicbased health research during critical care admissions, as the result of genome-based research requirements of unprecedented large sample sizes. Few reports describe patients' perceptions and responses to actual biobanking approaches in clinical settings. A qualitative study was conducted to explore 568 cardiac care patients' explanations of why they declined to contribute their samples to a future genomic research biobank. Objectives To (1) identify themes emerging from explanations for declining contribution to the research biobanking initiative and (2) determine how the content informs the stewardship conceptual framework that addresses evidence-based clinical ethics practices in genomic and genetic research biobanking. Methods This qualitative study used an analytic method that combines inductive and deductive approaches to identify themes in patients' explanations for declining to contribute to a research biobank initiative. The hybrid design has relevance to health services research that seeks to develop taxonomy, themes, and theory. Results Inductive approaches showed that themes of intrusion and autonomy dominated explanations. Deductive approaches affirmed previously proposed elements of a stewardship conceptual framework that addresses ethics in biobanking. Conclusion Research in understanding patients' perceptions can guide nursing and biobank practices in developing best practices. © 2013 American Association of Critical-Care Nurses.