Ethical considerations for leprosy researchers.

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Date: Mar. 2022
From: Leprosy Review(Vol. 93, Issue 1)
Publisher: British Leprosy Relief Association
Document Type: Viewpoint essay
Length: 5,118 words
Lexile Measure: 1840L

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The aim of Leprosy Review (LR) is to contribute to the better understanding of leprosy and its control, mainly through publishing reports of research. Some authors are clinicians or field workers rather than being primarily scientists. As a member of a Research Ethics Committee under the UK Health Research Authority (CRB) and a university lecturer in research integrity (RP), and as Associate Editors of LR (both), we hope that this article will help such authors to recognise and manage the ethical aspects of their studies. We begin with commonly accepted statements of ethical principles, the application of these principles to particular circumstances, and then discuss Ethical Review and the issues it would cover; we then consider methods used by editorial boards to ensure ethical standards in their publications. Finally, we highlight some of the potentially difficult issues in leprosy-related research.

Ethical research principles, historical perspective

Research involving human subjects is essential if there is to be evidence on which to base decisions about clinical management of cases, and about public health programmes and policies (including the management of disability, stigmatisation or social disadvantage related to health issues). This has to be done in an ethical manner, however, based on three generally accepted underlying principles of respect for persons, beneficence and justice.

One of the earliest modern statements of acceptable standards for ethical behaviour in relation to research involving human subjects was the Declaration of Helsinki, (1) which has, since its original publication in (1947), been through many revisions but is still considered a valuable reference document. Two more recently-compiled authoritative publications, on epidemiological studies and on health-related research involving humans, respectively, are those from the Council of International Organisations of Medical Sciences. (2,3) These offer point-bypoint guidelines on how the ethical principles governing the conduct of biomedical research, set forth in the Declaration of Helsinki, could be effectively applied, particularly in low and middle income countries (LMIC), taking into account local cultural and physical factors (such as geographical aspects and availability of facilities). An online module is available to facilitate their use. (3) Reaching consensus on detailed implementation of the guidelines can be difficult as researchers involved will have to consider prevailing values in the community concerned. The Nuffield Council on Bioethics has helpfully proposed several principles, including the need to be sensitive to cultural differences, and not to exploit people. (4) The duty of cultural sensitivity arises from respect for persons and does not require compromise of fundamental values: "the principle of equal respect does not imply that we must behave towards others in a uniform manner, since features of individuals and of their circumstances, will differ. Parity of respect requires us to address the specific needs and circumstances of individuals in determining how to behave towards them" (Section 7.10, page 90). (4) Inequalities in power and advantage between researchers and the population targeted present real risks of exploitation: researchers have the responsibility to ensure that - so far as possible - communities in LMIC do actually benefit from...

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Gale Document Number: GALE|A698485290