No abstract

Although the ethics of social science research has not enjoyed as much scholarly attention as the ethics of biomedical research, social scientists continue to debate the relevance of research ethics and ethics review to social science research. Like social scientists, biomedical scientists have also objected to ethical review of biomedical research, and much has been gained from the ensuing debates. This chapter reviews much of this recent debate, and proposes the application of a framework developed by Emanuel, Wendler, and Grady (2008). We argue, however, that social scientists are generally inadequately trained in research ethics and may still espouse a dangerous view, common among behavioral scientists in the 1950s, that ethical concerns reflect a kind of methodological or scientific naiveté. We provide grounds for arguing, further, that social science research, with a few clear exceptions, should be rigorously ethically reviewed, and that research ethics committees have an obligation to be competent in the appropriate review of social science research, including qualitative research. Although the chapter refers largely to social science research, we include psychological research as a major domain of social science research.

The last fifteen years have witnessed a significant increase in investment in research ethics capacity development throughout the world. We examine nine research ethics training programs that are focused on Sub-Saharan Africa and supported by the US National Institutes of Health. We collected data from grants awards’ documents and annual reports supplemented by questionnaires completed by the training program directors. Together, these programs provided long-term training in research ethics to 275 African professionals, strengthened research ethics committees in 19 countries in Sub-Saharan Africa, and created research ethics curricula at many institutions and bioethics centers within Africa. Trainees’ leadership resulted in new national systems and policies on research ethics, human tissue storage and export, and methods of monitoring compliance with research ethics guidelines. Training programs adapted to challenges that arose due to varied trainees’ background knowledge in ethics, duration of time available for training, spoken and written English language skills, administrative obstacles, and the need to sustain post-training research ethics activities. Our report showcases the development of awareness of research ethics and building/strengthening of basic research ethics infrastructure in Sub-Saharan Africa. Nevertheless, the increasing amount and complexity of health research being conducted in Sub-Saharan Africa suggests the need for continued investment in research ethics capacity development in this region. This paper is part of a collection of papers analyzing the Fogarty International Center’s International Research Ethics Education and Curriculum Development program.

Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.

The abundance of South African clinical and public health research data has the potential to unlock important and valuable future advances in biomedical science. Amid increasing calls for more effective sharing of individual-level data, commitment to promote access to research data is evident within South Africa’s public research sector, but national guidance and regulation are absent. This qualitative study examined the perceptions, experiences and concerns of 32 research stakeholders about data-sharing practices. There was consensus about the utility of data sharing in publicly funded health research. However, disparate views emerged about the possible harms and benefits of sharing data and how these should be weighed. The relative dearth of policies governing data-sharing practices needs to be addressed and a framework of support developed that incentivizes data-sharing practices for researchers that are both ethical and effective.

The Emanuel, Wendler, and Grady framework was designed as a universal tool for use in many settings including developing countries. However, it is not known whether the work of African health research ethics committees (RECs) is compatible with this framework. The absence of any normative or empirical weighting of the eight principles within this framework suggests that different health RECs may raise some ethical issues more frequently than others when reviewing protocols. We used the Emanuel et al. framework to assess, code, and rank the most frequent ethical issues considered by a biomedical REC during review of research protocols for the years 2008 to 2012. We extracted data from the recorded minutes of a South African biomedical REC for the years 2008 to 2012, designed the data collection sheet according to the Emanuel et al. framework, and removed all identifiers during data processing and analysis. From the 98 protocols that we assessed, the most frequent issues that emerged were the informed consent, scientific validity, fair participant selection, and ongoing respect for participants. This study represents the first known attempt to analyze REC responses/minutes using the Emanuel et al. framework, and suggests that this framework may be useful in describing and categorizing the core activities of an REC.

This study investigated homicide-suicide in Durban, South Africa, for the years 2000 to 2001. The incidence was 0.89 per 100,000, higher than the international average. A majority of perpetrators (91%) and victims (87%) were Black African, proportional to their representation in the population. Perpetrators were typically men (in 95% of cases), older than, and intimate partners (in 75% of cases) of the female victims (in 100% of cases). Average ages of perpetrators and victims were 32 and 27, respectively. The security sector was overrepresented as an employment category for perpetrators. A firearm was used in 87% of the homicides and 80% of the suicides. The individuals involved in homicide-suicides in Durban are similar to homicide-suicide perpetrators and victims in industrialized countries. The fact that homicide-suicides in South Africa, as in most countries, involve almost exclusively men killing female intimates confirms the importance of examining and challenging social norms enabling male violence against women.

Accessing research participants within some social institutions for research purposes may involve a simple single administrative event. However, accessing some institutions to conduct research on their data, personnel, clients or service users can be quite complex. Research ethics committee chairpersons frequently field questions from researchers wanting to know when and why gatekeeper permission should be sought. This article examines the role and influence of gatekeepers in formal and organisational settings and explores pragmatic methods to improve understanding and facilitation of this process. Conscientious and well-informed negotiations with gatekeepers are required in order to honour the ethical obligations to conduct appropriate stakeholder engagement before and during research, along with respect for the autonomy of institutions and their employees/clients/service recipients. Provision must be made to identify explicit and implicit gatekeepers to initiate and build collaborative networks that could best support the research process. Careful mutually respectful access agreements which consider the needs and vulnerabilities of both the gatekeeper and the researcher can improve the quality of the scientific data collected. Strategic planning in the research process must take these sometimes complex processes of gatekeeper permission into careful account.