RT Journal Article
SR Electronic
T1 Consent and the ethical duty to participate in health data research
JF Journal of Medical Ethics
JO J Med Ethics
FD BMJ Publishing Group Ltd and Institute of Medical Ethics
SP medethics-2017-104550
DO 10.1136/medethics-2017-104550
A1 Angela Ballantyne
A1 G Owen Schaefer
YR 2018
UL http://jme.bmj.com/content/early/2018/01/22/medethics-2017-104550.abstract
AB The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency.