What are the Ethical Approaches Used by Experts When Sharing Health Data? - An Interview Study

Background: Health data driven activities have become central in diverse areas (research, AI development, wearables, etc.), and new ethical challenges have arisen with regard to privacy, integrity, and appropriateness of use. To improve data subjects’ privacy and security, we aim to identify ethically relevant issues experienced by experts in the data intensive exploitation area while collecting, using, or sharing peoples’ health data. Methods: Twelve experts, who were collecting, using, or sharing health data in different contexts in Sweden were interviewed. We used systematic expert interviews to access experts’ specialist knowledge. Thereafter, thematic analysis was used to identify categories and subcategories. The codes targeted ethical issues and approaches reported by the interviewed experts. Results: The main conceptual categories were ‘Consideration of the consequences,’ ‘Respect for rights,’ ‘Procedural compliance,’ and ‘Professional conduct.’ The respondents discussed and balanced different ethical approaches through several examples. They were morally sensitive to the problems involved in sharing health data. Conclusions: : These empirical findings suggest a need for practical procedures that make it easier for data collectors and sharers to follow the ethical principles and laws relating to data sharing. We suggest that the time is now ripe to move on from policy discussions to practical technological solutions of the principles.