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In a context of rapid technoscientific advancements and emergent research responses to new global dynamics and challenges, the field of research ethics needs to broaden its scope. Necessary issues to be included are environmental issues, new technologies, animal issues and social justice. Social justice can be defined as a guiding principle for achieving a just society. This includes:

1.   Full and equal participation of individuals in all social institutions;

2.   Fair and equitable distribution of material and non-material goods;

3.   Recognition and support for the needs and rights of individuals.

To achieve social justice, we need to understand current inequalities. As such, historical processes of oppression and domination need to be taken into account.

Commitment from the Research Ethics Community

Current challenges in research ethics related to social justice are broad. Many of them are related to inclusivity of historically marginalised populations or populations that have been tagged as vulnerable. However, to address these issues, research and research ethics experts need to understand social justice issues as matters of research ethics as well. If the research ethics community does not address issues related to social justice in research as an ethical and moral duty, any initiative will most likely fail in its implementation.

Inclusion and exclusion of marginalised and vulnerable populations

Challenges related to including or excluding certain population groups such as research participants are matters of social justice that have implications for such groups. These challenges also impact the representativeness and even robustness of the research itself. From a research ethics point of view, historically vulnerable and marginalised groups have been systematically excluded from research for the sake of their own protection (i.e. children or pregnant women) or because of the delays and extra complexities that including such groups entail. For example, language barriers, culturally sensitive issues and geographical distance prolong research processes.

In practice, both the exclusion and inclusion of a specific population provoke ethical and methodological questions and present challenges for researchers, research ethics committees and other research workers. For example, imagine if a research team developing an AI tool to identify skin diseases predominantly used data from a uniform ethnic group due to availability of participants. The tool would result in considerably less accurate and efficient recognition of other ethnic groups’ dermatological conditions. A similar example would be a team of researchers aiming to get ethical approval for a study that evaluates the prevalence of obesity and its determinants in a lower-income neighbourhood. The informed consent process presents some potential shortcomings in addressing specific needs of the targeted population. However, despite these shortcomings, the study otherwise meets all the requirements so the proposal is approved.

These cases show how research can perpetuate social injustices if issues of inclusion and exclusion are not taken into account. While including marginalised and vulnerable populations in research may cause delays or additional challenges in the research process, neglecting them or not including them and their needs adequately can negatively affect these populations’ wellbeing, health, autonomy, agency and even dignity. Therefore, it is necessary to enact this change in research now.

Shift in Research ethics

Research ethics processes are key to improving and facilitating inclusiveness in the research process generally. Increasing awareness of research ethics experts, adapting existing ethical guidelines or creating new ones, rethinking ethics review processes and adapting informed consent processes are just a few of the ways that research ethics can create a socially just research environment. Involving marginalised communities in research ethics initiatives, processes and structures is the first step in achieving this and this may require a change in individual and communal assumptions. To navigate these complex situations and avoid perpetuating systemic inequalities and disadvantages, we need to both preserve research participants’ protection and not exclude any participants.

Research ethics workers have the opportunity to adapt and create ethical guidelines, processes and training to encourage a shift in the scientific community. Instead of perceiving the inclusion of vulnerable and marginalised populations as a time-consuming obstacle, research ethics workers can encourage the scientific community to perceive inclusion as an epistemic and moral gain in research and research ethics.

Author:

Claudia Pallise Perello, Amsterdam University Medical Center