Research studies involving humans now have many layers of ethics. Researchers are required to take courses, continuing education, and certifications in ethics before being allowed to conduct their research. Research projects involving human participants are required to receive the blessing of a Review of Ethics Board, who evaluate everything from the recruitment materials to the data collection to the analysis to the knowledge mobilization and data archiving plan. Funding bodies and publishers often have their own requirements around ethics.
All of these safeguards exist for good reasons. Humanity has a long history of unethical research practices, with highlights such as Mengele and the Tuskegee Experiments. The Wakefield study that fraudulently claimed a causal link between the MMR vaccine and Autism is one that hits particularly close to home for me. Ethics standards, training, and review have been incorporated into the research process to prevent these kinds of egregious violations of the rights and dignity of participants, especially those of minority groups and those who aren’t considered competent to provide their own consent for participation. The TCPS2 defines participant vulnerability as “often caused by limited decision-making capacity, or limited access to social goods, such as rights, opportunities, and power.”
Special consideration for vulnerable populations when participating in research is essential to protect those groups that have been historically and contemporarily exploited and harmed. However, care must be taken such special considerations not result in the exclusion of those vulnerable populations. For example, Autistic individuals are often considered vulnerable within research contexts, and researchers wishing to explore their experiences directly may meet significant hurdles in the ethics review process. Those hurdles may server to protect Autistics from exploitation and harm, but they also make it more difficult for Autistics to be centred in research about them. Researchers may choose instead to centre on the experiences of parents, psychologists, or other caregivers of Autistics since they involve less bureaucracy, exacerbating the power imbalance that creates their vulnerability in the first place.
The focus on vulnerable populations as those who cannot defend themselves, who are in need of protection, places researchers and ethics review board members in the position of saviour, beneficent though they may be. That mindset can also carry over through conscious and unconscious bias towards researchers who are members of the population they wish to study. After all, if an Autistic person cannot be trusted to provide informed consent as a participant, how can they be expected to protect the consent of others? This adds an additional layer of power imbalance, reducing opportunities for minority group members not only to participate in research about them but to be the ones designing and conducting the studies. Of course, the same bias reduces the opportunities for minority groups to participate as members of ethics review boards and other positions of power and oversight.
“Nothing about us without us” should be the policy when it comes to vulnerable populations in research ethics. Care must be taken that any protections implemented for such populations not reduce opportunities for them to effectively participate in, conduct, and review the ethics for studies focused on their experiences. While the TCPS2 standard lays out requirements for engagement with Indigenous communities when conducting research with Indigenous participants, no such requirements are defined for other marginalized groups. Similar requirements could be drafted to cover other vulnerable populations to ensure their needs are heard and respected rather than assumed or ignored.
Vulnerable populations should be at the centre of the ethics process for research about them from participation, to conducting studies, to ethics review, to even defining if they consider themselves to be vulnerable or not, and in what ways. Dismantling the saviour complex of academic research is part of the ongoing work of improving equity, diversity, inclusion, decolonization, Indigenization, accessibility, and anti-racism.