Consent and the ethical duty to participate in health data research

Journal of Medical Ethics 44 (6):392-396 (2018)
Download Edit this record How to cite View on PhilPapers
Abstract
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.
Categories
(categorize this paper)
PhilPapers/Archive ID
BALCAT-13
Revision history
Archival date: 2018-01-23
View upload history
References found in this work BETA
The Social Licence for Research: Whycare.Dataran Into Trouble.Carter, Pam; Laurie, Graeme T. & Dixon-Woods, Mary

View all 11 references / Add more references

Citations of this work BETA

Add more citations

Added to PP index
2018-01-23

Total views
113 ( #21,771 of 39,647 )

Recent downloads (6 months)
43 ( #11,255 of 39,647 )

How can I increase my downloads?

Downloads since first upload
This graph includes both downloads from PhilArchive and clicks to external links.