Protecting or Empowering the Vulnerable? Mental Illness, Communication and the Research Process

Abstract

People with mental illness are treated, in research, as a ‘class’ or category who are vulnerable, without always being clear why they should be treated as such, not why an individual, rather than the class, is vulnerable. The two main reasons given are lack of competence and power imbalance. Competence issues include incapacity and legislation, assessment and the impact of the illness in decisions. Power issues cover the role of mental health legislation, coercion, protectiveness and paternalism, stigma and discrimination and the ‘well’ and ‘ill’ self. These are examined within a framework of risk assessment, both to the patient and to others. Over-concern to protect the vulnerable can lead to gate-keepers preventing their inclusion in studies at various stages of the research. This denies such groups a voice in the research process. It is suggested that ethical scrutiny of research is not only to prevent harm to the vulnerable, but also to provide a framework to empower such people to take part in research. To do otherwise is to further stigmatize and marginalize them. One way forward is to look at the risk presented by different types of research, from clinical intervention trials to non-therapeutic, qualitative studies and to modify capacity and access requirements in the light of the risks presented.

Advance directives in dementia research: The opinions and arguments of clinical researchers − an empirical study

“…The interviewees stressed the vulnerability of this population, and seem to be more concerned about protection and objections against research than with concepts such as authorization and autonomous choice. This focus on protection is sometimes referred to as 'gate-keeping' (Atkinson, 2007). The clinical researchers did not value the advance directive as a compensation for the lack of a patient's autonomous consent.…”

Conducting Sensitive Research With Disabled Women Who Experience Domestic Abuse During Pregnancy: Lessons From a Qualitative Study

“…Gatekeepers are bound by a duty of care toward their service users and may be worried that engaging with the research will negatively affect participants, particularly if the research involves a sensitive topic or potentially vulnerable participants. According to Atkinson (2007), however, it is important that the desire to protect potential participation does not deny them the opportunity to have a voice in the research process. In our study, for example, one disability organization we contacted was reluctant to help us with recruitment because, in its view, "disabled people don't like to talk about sensitive issues."…”

Interpreting for vulnerable populations: Tracing the role of interpreters in contexts of vulnerability

“…Considering these definitions, some of the vulnerable populations identified in relevant literature are children (Bagattini 2019); people with disabilities (Scully 2013); deaf people; people with mental illnesses (Atkinson 2007); patients with dementia; elderly people; and migrants, refugees, and asylum seekers (Strokosch & Osborne 2016;Grubb & Frederiksen 2022). Mackenzie, Rogers, and Dodds (2013) posit that, as social and affective beings, we are emotionally and psychologically vulnerable to others in myriad ways: to loss and grief; to neglect, abuse, and lack of care; and to rejection, ostracism, and humiliation.…”