Teaching Vulnerability in Research: A Study of Approaches Utilized by a Sample of Research Ethics Training Programs

Abstract

This article reports the outcomes of qualitative research on the teaching of “vulnerability in research” undertaken with principal investigators of international bioethics training programs funded by the Fogarty International Center of the National Institutes of Health (NIH) of the United States. To properly contextualize this research, we begin with an overview of the various ways in which vulnerability has been conceptualized both by writers and by ethical guidance from low-, middle-, and high-income countries. We conclude with some preliminary suggestions for best practice and recommendations for further research. To the best of our knowledge, this is the first time research of this kind has been carried out.

Reflections on researching vulnerable populations: Lessons from a study with Bhutanese refugee women

“…This requires research to be designed and conducted in ways that address the needs of those involved appropriately and to ensure participants are protected and empowered. Vital to the conduct of ethical research is how researchers understand and respond to the vulnerabilities of others (Loue & Loff, 2019). This means that all researchers that involve such groups need to incorporate reflective practice into their research practice, both when planning their approach and after their study is complete, to consider what might be have done differently.…”

“…Vulnerable study populations can affect every step of a research study from planning, data collection, data validation to dissemination (Marsh et al, 2017) and may interrupt or distort the way that research can be carried out (Von Benzon & Van Blerk, 2017). In the report of their study of 11 funded international bioethics training programs, Loue and Loff (2019) contend that central to research ethics is how we understand vulnerability. In their study, conceptions of vulnerability differed across the training programs; a minority portrayed vulnerability as a "multidimensional construct"; one program described the vulnerability as layering or intersecting.…”

“…Such variations in vulnerability conceptions highlight the responsibility of researchers to understand the ways that their study participants are vulnerable if they are to appropriately protect them from further harm. Such protections commonly involve practical matters to address issues of consent, risk of harm and social justice (Loue & Loff, 2019).…”

Global Perspectives on Race in Health Research: Neocolonial Extraction and Local Marginalization

“…Better regulation and management of research with expanded capacities of in-country research agencies is needed for LMICs to have autonomy over research conducted locally. Training and development of research ethics committees (RECs) and institutional review boards (IRBs) in LMICs has been among the goals of training activities [174][175][176][177][178][179][180]. As autochthonous research capacity in LMICs expands, so will the need to ensure review of local research proposals by ethics review boards, provide ethical oversight with data and safety monitoring boards, and ensure expert guidance [181][182][183][184][185][186][187][188][189][190][191][192].…”

Vulnerability and Resilience in Sensitive Research: The Case of the Quantitative Researcher

“…Literature concerning research-related experiences largely focuses on the participants (Andriessen et al, 2018;Jaffe et al, 2015). A special emphasis within this literature is on the possible positive and negative effects of this experience on the participants' mental state (Jaffe et al, 2015) and their vulnerability (Lajoie et al, 2020;Loue & Loff, 2019).…”