Incorporating gender into ethics reflections when conducting health systems research…. Where to begin?

The title of this blog includes many head-scratching elements:  What is health systems research?  What’s is gender analysis?  What are ethics?  And then how on earth can we bring all three of these complex elements together to reflect upon them in our studies?   Of course each of these areas could be – and appropriately is – studied in great depth by experts from diverse disciplines across the world.

But there is so much information out there it can be quite overwhelming for a health systems researcher to know where to start for multi-method studies involving substantial qualitative elements.

So in this blog I want to provide a few suggestions of entry points that you can use. Bearing in mind that there is no ‘right way’ of doing it.

Gender and ethics analysis are intricately inter-related

Ethics can be defined as the norms and standards – whether written or spoken, conscious or unconscious – that guide personal and interpersonal conduct. They help us think about what ought to happen in different situations, and on what actions or behaviours are right or wrong. There are three widely agreed broad values or norms considered fundamental to conducting ethical research:

• Beneficience and non-maleficence, i.e. that research on human subjects should produce some positive and identifiable benefit, however indirect and long-term, and that researchers should care for the well-being of and avoid harming participants;
• Respect for persons and, increasingly, communities, i.e. that the values and decisions of research participants and the communities from which they come should be respected, and;
• Justice, i.e. that people should be treated equally and there should be fairness in who participates in and gains from research.

Gender is the socially constructed roles, behaviors, activities, and attributes that a given society considers appropriate for men, women and other genders (WHO 2015). It shapes individual identities and values, interpersonal relationships, and how social systems are organised (in terms of social norms, institutions, structures, and resources). As such it is difficult to disentangle gender and ethics in conducting health systems research.

In our work we need to ask:

• Have we considered the potential differences in interests and experiences between men, women and other genders?
• How do these differences inter-relate with other social stratifiers (such as class race, education, ethnicity, age, geographic location, (dis)ability, and sexuality?

Biomedical ethics guidelines and regulations: Incorporating a gender lens

There are many research ethics recommendations and guidelines based on the three fundamental research ethics values and norms outlined above. Emanuel et al. identified eight principles and 31 corresponding benchmarks to consider in planning and reviewing clinical research in developing countries. Because this paper draws on guidelines that are so familiar to biomedical researchers, we found this to be an accessible and useful framework to think about ethical questions for multi-method health systems studies, including studies that involve a substantial amount of qualitative research. We didn’t use this framework as a checklist to tick off ‘doing ethics’ or ‘being ethical’ but as set of considerations to prompt discussion and weighing-up of issues.

Applying a gender lens could also involve considering how groups of principles and benchmarks might apply differently to different genders as a result of gender differences in: 1) access to resources, 2) division of labour, 3) social norms and 4) rules and decision-making.  For example:

• Do community engagement and consent processes consider gendered decision-making processes in households?
• Will the potential benefits and harms of the research during and after research accrue equally to men, women and other genders given gender differences in access to resources or divisions of labour?
• Has the research considered gendered social norms and will it at least ensure there is no gendered harm, even if there is unlikely to be a transformation of damaging norms?

Recognising the limitations of (biomedical) guidelines and regulations

The application of all guidelines and regulations in practice is contested and limited:

• “…the ethics of human subjects research may be universal but is at the same time deeply particularized, so that what autonomy or informed consent or even benefit and harm means depends on the circumstances” (King, cited in Quinn 2004) 

• “current guidelines and regulations are an inadequate response to the complex, often unpredictable and ever shifting ethical dilemmas facing researchers ‘in the field’” (Mitchell, Nakamanya, Kamali et al., 2002).

Understanding what ethical priorities and concerns are in different settings and communities, and how these unfold and change over time and over the course of studies, is essential.  Ideally all analyses would be gendered.

Examples of how these analyses may be conducted include:

• In-depth social science studies specifically designed to examine values and perspectives of diverse community members in different contexts, including on particular topics (see for example this study from Kenya).
• Careful community engagement activities in advance of studies aimed at identifying communities’ priorities and concerns and responding to them in terms of study content, design, process and outcomes. Gender and other social stratifiers should be a key consideration in relation to who is engaged with, where engagement activities happen, how they are organised, and what topics are covered. Community engagement is increasingly recommended for all studies by funders and reviewers globally (and is built into community based participatory research), and there is growing funding for such activities. This paper provides an overview of key issues.
• Regular reflection among team members conducting the research on the ground about ethical issues being raised as the study unfolds – i.e. issues where there is a moral dilemma; a worry and need for careful reflection about what ought to be done. This latter point is arguably good practice anyway for any research, but adding a gender/ethics lens helps to guide reflection and ensure that potential for gendered harm is minimised and benefits maximised. The kinds of issues raised and how they are handled is illustrated in this paper by Kamuya et al.

We have found that in practice it is often the social relationships – many of which involve complex imbalances of power – that are established in research teams, between researchers and health staff and managers, and between field-teams and community members, that are critical to fulfilling the moral (as opposed to the legal) aspects of ethics practice in health policy and systems research. These need gendered consideration prior to, throughout, and on completion of the study.  This can be done in many ways, the points above are just some initial suggestions.

Sassy Molyneux is part of the steering committee for Research in Gender and Ethics (RinGs): Building Stronger Health Systems. She is employed by Oxford University and has been working as part of the KEMRI-Wellcome Trust Research Programme in Kilifi, Kenya, since 1994. 

For more information about RinGs visit our website.