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Defining Malaysia's health research ethics system through a stakeholder driven approach

The need to understand the systems that support ethical health research has long been recognized, but there are limited descriptions of actual health research ethics (HRE) systems. Using participatory network mapping methods, we empirically defined Malaysia's HRE system. 13 Malaysian stakeholde...

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Main Authors:	Tackett, Sean, Ng, Chirk Jenn, Sugarman, Jeremy, Daniel, Esther Gnanamalar Sarojini, Gopalan, Nishakanthi, Tivyashinee, Tivyashinee, Kamarulzaman, Adeeba, Ali, Joseph
Format:	Article
Published:	Wiley 2024
Subjects:	R Medicine
Online Access:	http://eprints.um.edu.my/46071/
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id	my.um.eprints.46071
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spelling	my.um.eprints.460712024-07-16T08:11:26Z http://eprints.um.edu.my/46071/ Defining Malaysia's health research ethics system through a stakeholder driven approach Tackett, Sean Ng, Chirk Jenn Sugarman, Jeremy Daniel, Esther Gnanamalar Sarojini Gopalan, Nishakanthi Tivyashinee, Tivyashinee Kamarulzaman, Adeeba Ali, Joseph R Medicine The need to understand the systems that support ethical health research has long been recognized, but there are limited descriptions of actual health research ethics (HRE) systems. Using participatory network mapping methods, we empirically defined Malaysia's HRE system. 13 Malaysian stakeholders identified 4 overarching and 25 specific HRE system functions and 35 actors internal and 3 external to the Malaysian HRE system responsible for those functions. Functions requiring the most attention were: advising on legislation related to HRE; optimizing research value to society; and defining standards for HRE oversight. Internal actors with the greatest potential for more influence were: the national network of research ethics committees; non-institution-based research ethics committees; and research participants. The World Health Organization, an external actor, had the largest untapped potential for influence overall. In summary, this stakeholder-driven process identified HRE system functions and actors that could be targeted to increase HRE system capacity. Wiley 2024-06 Article PeerReviewed Tackett, Sean and Ng, Chirk Jenn and Sugarman, Jeremy and Daniel, Esther Gnanamalar Sarojini and Gopalan, Nishakanthi and Tivyashinee, Tivyashinee and Kamarulzaman, Adeeba and Ali, Joseph (2024) Defining Malaysia's health research ethics system through a stakeholder driven approach. Developing World Bioethics, 24 (2). pp. 74-83. ISSN 1471-8731, DOI https://doi.org/10.1111/dewb.12396 <https://doi.org/10.1111/dewb.12396>. 10.1111/dewb.12396
institution	Universiti Malaya
building	UM Library
collection	Institutional Repository
continent	Asia
country	Malaysia
content_provider	Universiti Malaya
content_source	UM Research Repository
url_provider	http://eprints.um.edu.my/
topic	R Medicine
spellingShingle	R Medicine Tackett, Sean Ng, Chirk Jenn Sugarman, Jeremy Daniel, Esther Gnanamalar Sarojini Gopalan, Nishakanthi Tivyashinee, Tivyashinee Kamarulzaman, Adeeba Ali, Joseph Defining Malaysia's health research ethics system through a stakeholder driven approach
description	The need to understand the systems that support ethical health research has long been recognized, but there are limited descriptions of actual health research ethics (HRE) systems. Using participatory network mapping methods, we empirically defined Malaysia's HRE system. 13 Malaysian stakeholders identified 4 overarching and 25 specific HRE system functions and 35 actors internal and 3 external to the Malaysian HRE system responsible for those functions. Functions requiring the most attention were: advising on legislation related to HRE; optimizing research value to society; and defining standards for HRE oversight. Internal actors with the greatest potential for more influence were: the national network of research ethics committees; non-institution-based research ethics committees; and research participants. The World Health Organization, an external actor, had the largest untapped potential for influence overall. In summary, this stakeholder-driven process identified HRE system functions and actors that could be targeted to increase HRE system capacity.
format	Article
author	Tackett, Sean Ng, Chirk Jenn Sugarman, Jeremy Daniel, Esther Gnanamalar Sarojini Gopalan, Nishakanthi Tivyashinee, Tivyashinee Kamarulzaman, Adeeba Ali, Joseph
author_facet	Tackett, Sean Ng, Chirk Jenn Sugarman, Jeremy Daniel, Esther Gnanamalar Sarojini Gopalan, Nishakanthi Tivyashinee, Tivyashinee Kamarulzaman, Adeeba Ali, Joseph
author_sort	Tackett, Sean
title	Defining Malaysia's health research ethics system through a stakeholder driven approach
title_short	Defining Malaysia's health research ethics system through a stakeholder driven approach
title_full	Defining Malaysia's health research ethics system through a stakeholder driven approach
title_fullStr	Defining Malaysia's health research ethics system through a stakeholder driven approach
title_full_unstemmed	Defining Malaysia's health research ethics system through a stakeholder driven approach
title_sort	defining malaysia's health research ethics system through a stakeholder driven approach
publisher	Wiley
publishDate	2024
url	http://eprints.um.edu.my/46071/
_version_	1805881184539901952
score	13.211869

Defining Malaysia's health research ethics system through a stakeholder driven approach

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