Article Text
Abstract
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.
- capacity
- research on special populations
- informed consent
- research ethics
Statistics from Altmetric.com
Read the full text or download the PDF:
Other content recommended for you
- Informed consent for functional MRI research on comatose patients following severe brain injury: balancing the social benefits of research against patient autonomy
- Ethical aspects of research into Alzheimer disease. A European Delphi Study focused on genetic and non-genetic research
- Healthcare professionals’ understanding of the legislation governing research involving adults lacking mental capacity in England and Wales: a national survey
- Protocol for a scoping review to understand what is known about how GPs make decisions with, for and on behalf of patients who lack capacity
- Support needs of carers making proxy healthcare decisions for people with dementia: a systematic review based on the Noblit and Hare meta-ethnographic synthesis of qualitative studies
- Old problems in need of new (narrative) approaches? A young physician–bioethicist’s search for ethical guidance in the practice of physician-assisted dying in the Netherlands
- Ethical issues in Alzheimer’s disease research involving human subjects
- Acknowledging awareness: informing families of individual research results for patients in the vegetative state
- Researching about us without us: exploring research participation and the politics of disability rights in the context of the Mental Capacity Act 2005
- Using informed consent to save trust