Re-considering vulnerability in mental health research ethics
Eric Racine, PhD (Pragmatic Health Ethics Research Unit, Université de Montréal, McGill University); Emily Bell, PhD (Pragmatic Health Ethics Research Unit, at the time of the study); Mary Ellen Macdonald, PhD (McGill University); Gustavo Turecki, MD, PhD (McGill University), Dearbhail Bracken-Roche, MSc (Pragmatic Health Ethics Research Unit, at the time of the study); Jelena Poleksic, MSc (Pragmatic Health Ethics Research Unit); Corinne Lajoie, MPhil (Pragmatic Health Ethics Research Unit), Gabrielle Doré (Pragmatic Health Ethics Research Unit)
Canadian Institutes of Health Research (CIHR)
The concept of “vulnerability” is widely used in the policies and guidelines that govern research ethics. This concept is often used to designate “vulnerable populations”, who need special considerations and protections in research. However, it is not often clear whether the labelling of specific groups as vulnerable is based on evidence, nor how to best respond to a specific group’s vulnerability. In some international research ethics policies, vulnerability is mentioned largely with respect to justice and in other policies it is underscored by respect for persons. Sometimes, the concept has been described as a patient- or research participant-centered attribute without full consideration of how relational and contextual factors could compound or diminish vulnerability.
The aim of this project is to critically re-reconsider the theoretical assumptions and practical implications of the concept of “vulnerability” in research ethics in the context of the introduction of novel research and clinical innovation in adult psychiatric care.
This research has 3 key parts:
- Review of research ethics policies and guidelines on vulnerability and mental health conditions;
- Survey of and interviews with researchers and persons with lived experience of mental health conditions on vulnerability in research; and
- Interdisciplinary working group with experts (organizational partners, researchers) to produce policy recommendations and guidance.
Racine, E., & Bracken-Roche, D. Enriching the concept of vulnerability in research ethics: An integrative and functional account. Bioethics, in press.
Bracken-Roche, D., Bell, E., Macdonald, M. E., & Racine, E. (2017). The concept of “vulnerability” in research ethics: An in-depth analysis of policies and guidelines. Health Research Policy and Systems, 15(1), 8.
Bracken-Roche, D., Bell, E., & Racine, E. (2016). The ”vulnerability” of psychiatric research participants: Why this research ethics concept needs to be revisited. Canadian Journal of Psychiatry, 61(6), 335-339.
Bell, E., Racine, E., Chiasson, P., Dufourcq-Brana, M., Dunn, L. B., Fins, J. J., Ford, P. J., Glannon, W., Lipsman, N., Macondald, M. E., Mathews, D. J., & McAndrews, M. P. (2014). Beyond consent in research: Revisiting vulnerability in deep brain stimulation for psychiatric disorders. Cambridge Quarterly of Healthcare Ethics, 23(3), 361-368.