Research involving adults who lack capacity to consent relies on proxy (or surrogate) decision making. Proxy decisions about participation are ethically complex, with a disparity between normative accounts and empirical evidence. Concerns about the accuracy of proxies’ decisions arise, in part, from the lack of an ethical framework which takes account of the complex and morally pluralistic world in which proxy decisions are situated. This qualitative study explored the experiences of family members who have acted as a research proxy in order to develop an understanding of the ethical concepts involved, and the interactions between those concepts. Proxies described a complex process of respecting the wishes and preferences of the person they represented, whist integrating preferences with what they viewed as being in the interests of the person. They aimed to make a decision that was ‘best’ for the person and protected them from harm; they also aimed to make the ‘right’ decision, viewed as being authentic to the person’s values and life. Decisions were underpinned by the relationship between the person and their proxy, in which both trust and trustworthiness were key. Proxies’ decisions, based both on respect for the person and the need to protect their interests, arose out of their dual role as both proxy and carer. The findings raise questions about accounts which rely on existing normative assumptions with a focus on accuracy and discrepancy, and which fail to take account of the requirement for proxies to make authentic decisions that arise out of their caring obligations.
- research on special populations
- informed consent
- research ethics
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Contributors This study forms part of a doctoral research fellowship held by VS, and supervised by FW, KH, RG and MS. VS, FW, KH, RG and MS conceived the study. VS conducted the qualitative interviews and led the data analysis. All authors were involved with the development of the initial framework and interpretation of the data. The further development of this framework was led by VS and MS. VS drafted the article, and all authors critically revised the article and subsequent revisions.
Funding This study forms part of an NIHR Doctoral Research Fellowship, funded by the Welsh Government through Health and Care Research Wales (NIHR-FS-16). MS is supported by the NIHR Oxford Biomedical Research Centre, grant BRC-1215-20008 to the Oxford University Hospitals NHS Foundation Trust and the University of Oxford.
Disclaimer The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval Ethical approval for the study was provided by the School of Medicine Research Ethics Committee, Cardiff University (SMREC Reference Number 17/54).
Provenance and peer review Not commissioned; externally peer reviewed.
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