Literature DB >> 29358219

Consent and the ethical duty to participate in health data research.

Angela Ballantyne1, G Owen Schaefer2.   

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. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Keywords:  distributive justice; informed consent; research ethics

Mesh:

Year:  2018        PMID: 29358219     DOI: 10.1136/medethics-2017-104550

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  11 in total

1.  Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK.

Authors:  Linda A Jones; Jenny R Nelder; Joseph M Fryer; Philip H Alsop; Michael R Geary; Mark Prince; Rudolf N Cardinal
Journal:  BMJ Open       Date:  2022-04-27       Impact factor: 3.006

Review 2.  Challenges and opportunities for artificial intelligence in oncological imaging.

Authors:  H M C Cheung; D Rubin
Journal:  Clin Radiol       Date:  2021-04-24       Impact factor: 3.389

3.  In response to Ballantyne and Schaefer's 'Consent and the ethical duty to participate in health data research'.

Authors:  Nilay Hepgul; Katherine E Sleeman; Alice M Firth; Anna Johnston; James T H Teo; William Bernal; Richard J B Dobson; Irene J Higginson
Journal:  J Med Ethics       Date:  2019-01-07       Impact factor: 2.903

4.  Ethical Considerations for Movement Mapping to Identify Disease Transmission Hotspots.

Authors:  Bouke C de Jong; Badou M Gaye; Jeroen Luyten; Bart van Buitenen; Emmanuel André; Conor J Meehan; Cian O'Siochain; Kristyna Tomsu; Jérôme Urbain; Koen Peeters Grietens; Maureen Njue; Wim Pinxten; Florian Gehre; Ousman Nyan; Anne Buvé; Anna Roca; Raffaella Ravinetto; Martin Antonio
Journal:  Emerg Infect Dis       Date:  2019-07       Impact factor: 6.883

5.  Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine.

Authors:  Amelia Fiske; Barbara Prainsack; Alena Buyx
Journal:  J Med Ethics       Date:  2019-07-12       Impact factor: 2.903

6.  Rethinking the ethical principles of genomic medicine services.

Authors:  Stephanie B Johnson; Ingrid Slade; Alberto Giubilini; Mackenzie Graham
Journal:  Eur J Hum Genet       Date:  2019-09-18       Impact factor: 4.246

7.  Ethical Principles, Constraints and Opportunities in Clinical Proteomics.

Authors:  Sebastian Porsdam Mann; Peter V Treit; Philipp E Geyer; Gilbert S Omenn; Matthias Mann
Journal:  Mol Cell Proteomics       Date:  2021-01-14       Impact factor: 5.911

8.  Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.

Authors:  Alex McKeown; Miranda Mourby; Paul Harrison; Sophie Walker; Mark Sheehan; Ilina Singh
Journal:  Sci Eng Ethics       Date:  2021-02-04       Impact factor: 3.525

9.  Where is the human in the data? A guide to ethical data use.

Authors:  Angela Ballantyne
Journal:  Gigascience       Date:  2018-07-01       Impact factor: 6.524

10.  Reimagining Health Data Exchange: An Application Programming Interface-Enabled Roadmap for India.

Authors:  Satchit Balsari; Alexander Fortenko; Joaquín A Blaya; Adrian Gropper; Malavika Jayaram; Rahul Matthan; Ram Sahasranam; Mark Shankar; Suptendra N Sarbadhikari; Barbara E Bierer; Kenneth D Mandl; Sanjay Mehendale; Tarun Khanna
Journal:  J Med Internet Res       Date:  2018-07-13       Impact factor: 5.428

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