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      Emergency care research ethics in low-income and middle-income countries

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          Abstract

          A large proportion of the total global burden of disease is caused by emergency medical conditions. Emergency care research is essential to improving emergency medicine but this research can raise some distinctive ethical challenges, especially with regard to (1) standard of care and risk–benefit assessment; (2) blurring of the roles of clinician and researcher; (3) enrolment of populations with intersecting vulnerabilities; (4) fair participant selection; (5) quality of consent; and (6) community engagement. Despite the importance of research to improve emergency care in low-income and middle-income countries (LMICs) and the widely acknowledged ethical challenges, very little has been written on the ethics of emergency care research in LMICs. This paper examines the ethical and regulatory challenges to conducting emergency care research with human participants in LMICs. We outline key challenges, present potential solutions or frameworks for addressing these challenges, and identify gaps. Despite the ethical and regulatory challenges, conducting high-quality, ethical emergency care research in LMICs is possible and it is essential for global health.

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          Ethical goals of community consultation in research.

          Jeremy Sugarman, Neal W Dickert (2005)
          In response to the traditional emphasis on the rights, interests, and well-being of individual research subjects, there has been growing attention focused on the importance of involving communities in research development and approval. Community consultation is a particularly common method of involving communities. However, the fundamental ethical goals of community consultation have not been delineated, which makes it difficult for investigators, sponsors, and institutional review boards to design and evaluate consultation efforts. Community consultation must be tailored to the communities in which it is conducted, but the purposes of consultation-the ethical goals it is designed to achieve-should be universal. We propose 4 ethical goals that give investigators, sponsors, institutional review boards, and communities a framework for evaluating community consultation processes.
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            Vulnerability in research and health care; describing the elephant in the room?

            Samia A Hurst (2008)
            Despite broad agreement that the vulnerable have a claim to special protection, defining vulnerable persons or populations has proved more difficult than we would like. This is a theoretical as well as a practical problem, as it hinders both convincing justifications for this claim and the practical application of required protections. In this paper, I review consent-based, harm-based, and comprehensive definitions of vulnerability in healthcare and research with human subjects. Although current definitions are subject to critique, their underlying assumptions may be complementary. I propose that we should define vulnerability in research and healthcare as an identifiably increased likelihood of incurring additional or greater wrong. In order to identify the vulnerable, as well as the type of protection that they need, this definition requires that we start from the sorts of wrongs likely to occur and from identifiable increments in the likelihood, or to the likely degree, that these wrongs will occur. It is limited but appropriately so, as it only applies to special protection, not to any protection to which we have a valid claim. Using this definition would clarify that the normative force of claims for special protection does not rest with vulnerability itself, but with pre-existing claims when these are more likely to be denied. Such a clarification could help those who carry responsibility for the protection of vulnerable populations, such as Institutional Review Boards, to define the sort of protection required in a more targeted and effective manner.
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              Seeking consent to genetic and genomic research in a rural Ghanaian setting: A qualitative study of the MalariaGEN experience

              Paulina Tindana, Susan Bull, Lucas Amenga-Etego … (2012)
              Background Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods The study used a rapid assessment incorporating multiple qualitative methods including in depth interviews, focus group discussions and observations of consent processes. Differences between verbal information provided during community engagement processes, and consent processes during the enrolment of cases and controls were identified, as well as the factors influencing the tailoring of such information. Results MalariaGEN participants and field staff seeking consent were generally satisfied with their understanding of the project and were familiar with aspects of the study relating to malaria. Some genetic aspects of the study were also well understood. Participants and staff seeking consent were less aware of the methodologies employed during genomic research and their implications, such as the breadth of data generated and the potential for future secondary research. Moreover, trust in and previous experience with the Navrongo Health Research Centre which was conducting the research influenced beliefs about the benefits of participating in the MalariaGEN study and subsequent decision-making about research participation. Conclusions It is important to recognise that some aspects of complex genomic research may be of less interest to and less well understood by research participants and that such gaps in understanding may not be entirely addressed by best practice in the design and conduct of consent processes. In such circumstances consideration needs to be given to additional protections for participants that may need to be implemented in such research, and how best to provide such protections. Capacity building for research ethics committees with limited familiarity with genetic and genomic research, and appropriate engagement with communities to elicit opinions of the ethical issues arising and acceptability of downstream uses of genome wide association data are likely to be important.
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                Author and article information

                Journal
                Journal ID (nlm-ta): BMJ Glob Health
                Journal ID (iso-abbrev): BMJ Glob Health
                Journal ID (hwp): bmjgh
                Journal ID (publisher-id): bmjgh
                Title: BMJ Global Health
                Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                ISSN (Electronic): 2059-7908
                Publication date Collection: 2019
                Publication date (Electronic): 29 July 2019
                Volume: 4
                Issue: Suppl 6
                Electronic Location Identifier: e001260
                Affiliations
                [1 ] departmentDepartment of Bioethics, Clinical Center , National Institutes of Health , Bethesda, MD, USA
                [2 ] Fogarty International Center, National Institutes of Health , Bethesda, MD, USA
                [3 ] Nelson R Mandela School of Clinical Medicine, University of KwaZulu-Natal , Durban, South Africa
                [4 ] departmentUniversity of Maryland School of Medicine , University of Maryland , Baltimore, MD, United States
                [5 ] Milken Institute School of Public Health, George Washington University , Washington, DC, USA
                [6 ] Stanford University School of Medicine, Stanford University , Stanford, CA, USA
                [7 ] departmentRegional Program on Bioethics, Department of Health Systems and Services , Pan American Health Organization , Washington, DC, United States
                Author notes
                [Correspondence to ] Dr Joseph Millum; millumj@ 123456cc.nih.gov
                Author information
                http://orcid.org/0000-0003-0716-9880
                Article
                Publisher ID: bmjgh-2018-001260
                DOI: 10.1136/bmjgh-2018-001260
                PMC ID: 6666811
                SO-VID: 47faae9c-2ed1-4ad9-9301-0415722a3c34
                Copyright © © Pan American Health Organization 2019. Licensee BMJ.
                License:

                This is an open access article distributed under the terms of the Creative Commons Attribution Non commercial IGO License ( https://creativecommons.org/licenses/by-nc/3.0/igo/), which permits use, distribution, and reproduction for non-commercial purposes in any medium, provided the original work is properly cited. In any reproduction of this article there should not be any suggestion that PAHO or this article endorse any specific organization or products. The use of the PAHO logo is not permitted. This notice should be preserved along with the article's original URL.

                History
                Date received : 01 November 2018
                Date revision received : 04 January 2019
                Date accepted : 12 January 2019
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/100000061, Fogarty International Center;
                Categories
                Subject: Analysis
                Subject: 1506
                Custom metadata
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                Keywords: emergency care,ethical emergency care research,research ethics
                Data availability:
                Keywords: emergency care, ethical emergency care research, research ethics

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