Return of Research Results to Study Participants: Uncharted and Untested

• Published in: JAMA : the journal of the American Medical Association Vol. 320; no. 5; pp. 435 - 436
• Main Authors: Wong, Charlene A, Hernandez, Adrian F, Califf, Robert M
• Format: Journal Article
• Language: English
• Published: United States American Medical Association 07.08.2018
• Subjects: Biomedical Research - ethics; Biomedical Research - standards; Health; Health care; Human subjects; Humans; Incentives; Information Dissemination - ethics; Information Dissemination - methods; Medical ethics; Medical research; Research data management; Research Subjects
• ISSN: 0098-7484; 1538-3598; 1538-3598
• DOI: 10.1001/jama.2018.7898

The return of individual results in the context of research studies is discussed. Research data is of great utility to study participants and their clinicians in understanding and managing patients' health who participate in research depending on the nature and clinical context of results. The return of research results to study participants provides a useful, structured environment to develop an empirical framework. Increasing calls for the return of research results for the participants of the study align with a cultural shift in health care toward participant engagement and open science. Returning research data is deemed a fundamental ethical obligation from the belief that individuals have a right to their own data and the theoretical considerations that health data serve as informational incentives.