Ethics of health policy and systems research: a scoping review of the literature.
Health policy and systems research (HPSR) is increasingly funded and undertaken as part of health system strengthening efforts worldwide. HPSR ethics is also a relatively new and emerging field, with numerous normative and descriptive questions that have largely not been considered. Normative questions include what ethical principles and values should guide HPSR. Descriptive questions include what ethical concerns arise when conducting HPSR. A small but growing body of scholarly work characterizes the various ethics issues inherent in HPSR. Towards informing the future development of ethics guidance for HPSR, a scoping review was undertaken to: (1) identify the range of ethics issues relevant to the conduct of HPSR-with a deliberate (though not exclusive) focus on low- and middle-income country settings and (2) describe existing guidance on key ethics issues relevant to HPSR. Using the Cochrane methods as a basis, the review identified formal and informal literature on HPSR ethics by searching the following databases: PubMed's Medline, Embase, Global Health, Scopus, WHO Global Health Regional Libraries, LILACs, OpenDOAR and Bielefeld Academic Search Engine. In total, 11 062 documents were identified from the formal (10 519) and informal (543) literature. One hundred and seven of these documents (formal 99 and informal 8) met at least one inclusion criterion and underwent thematic analysis. Ethical issues in four main categories were identified: upholding autonomy, identifying and balancing risks and benefits, justice and determination of ethical review requirements. The review indicated that the ethical values behind HPSR place an emphasis on its contributing to the reduction of health disparities. Unsurprisingly then, numerous ethical concerns relating to justice arise in HPSR. However, the majority of existing guidance focuses on obtaining or waiving informed consent and, thus, appears to be insufficient for HPSR. A list of priority ethics issues in HPSR in need of guidance development is provided.
Department of International Health, Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe St, Baltimore, MD 21205, USA.|Nossal Institute for Global Health, School of Population and Global Health, University of Melbourne, 161 Barry St, Carlton, Victoria 3053, Australia.
Bridget
B
Pratt
Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore, MD 21205, USA.
Amy
A
Paul
Department of International Health, Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe St, Baltimore, MD 21205, USA.|Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore, MD 21205, USA.
Adnan A
AA
Hyder
Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore, MD 21205, USA.
Joseph
J
Ali
D003906:Developing Countries; D004989:Ethics; D006291:Health Policy; D006302:Health Services Research / Q000941:ethics*; D054625:Healthcare Disparities / Q000941:ethics; D006801:Humans; D026684:Personal Autonomy
Developing countries; ethical guidance; ethics; health policy and systems research; research ethics committee; scoping review