The social licence for data-intensive health research: towards co-creation, public value and trust.

ABSTRACT:

Background

The rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social licence for achieving such ethical governance.

Main text

We performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search

SUBMITTER: Muller SHA 

PROVIDER: S-EPMC8353823 | biostudies-literature | 2021 Aug

REPOSITORIES: biostudies-literature