Relational ethics in palliative care research: including a person-centred approach

Abstract

The traditional approach to research ethics is to ensure that all ethical issues are adhered to through the scrutiny of research proposals by research ethics committees, themselves sitting within national research governance frameworks. The current approach implies that all potential ethical issues can be considered and mitigated prior to the research. This article is a perspective piece whereby we consider how this approach, on its own, is not enough to ensure ethical practice. We draw attention to the limitations of current ethical procedures in the inherent detachment between the researcher and research participants. We argue that applying a person-centred approach to research ethics allows for contextual and situational factors and places the relationship between research participants and researcher as central.

Ethical and practical considerations for interventional HIV cure-related research at the end-of-life: A qualitative study with key stakeholders in the United States

“…-Researcher #118 Informants further suggested multi-disciplinary research teams, including bioethicists and socio-behavioral scientists (Community member #104), who engage in open communication with the community (HIV clinician # 111 and Researcher #119) as another way to ensure an acceptable benefit/risk profile. Additionally, informants from each of our four key stakeholder groups recommended the informed consent process be "clearly explained to the participant" (HIV clinician #114) and include "process consent," an iterative, continuous consent process involving members of the research team and the participant [27]:…”

Ethical considerations for HIV remission clinical research involving participants diagnosed during acute HIV infection

“…Process consent consists of learning more about the person before the consent process begins, assessing legal capacity, obtaining initial consent, providing opportunities for ongoing consent (e.g., frequent re-consent), and obtaining feedback and providing the participant with additional support [ 139 ]. While process consent has been championed as a more appropriate means of obtaining consent from individuals living with dementia [ 139 ], other cognitive impairments, or within the context of palliative care [ 140 ], the “person-centered” nature of this approach could offer useful insights for researchers who work with other participants whose inclusion in research may raise similar ethical concerns.…”