Consent and nothing but consent? The organ retention scandal

Abstract

The organ retention scandal arose in the UK in the autumn of 1999 when knowledge of the practice of organ and tissue retention after post-mortem for subsequent diagnostic, teaching, audit and research purposes fully entered the public domain. Many families were shocked and distressed to realise that by allowing a post-mortem on their relative or child they were also deemed to have agreed to the long-term retention of organs and tissues and thus had buried or cremated, as they perceived it, not a 'whole' body but an 'empty shell'. Subsequently, informed consent was placed at the centre of recommendations for reform, now given expression in the Human Tissue Act (2004). Through a discourse analysis of the documentary evidence produced in the wake of the organ retention scandal, I argue that the emphasis on informed consent masks concerns about body wholeness. In addition, whilst informed consent is posited as key in 'balancing' the rights of the individual over the needs of medical science, this position is tempered by the concurrent presence of notions of the gift relationship and post-mortem citizenship. Incorporating these notions alongside the discourse of consent also renders concerns about the commodification of the body less acute.

Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

“…One study indicates that people are much more willing to donate their own tissue than that of their children [49]. For similar reasons protection of body integrity of a recently deceased person might appear more appealing than acceptance of tissue requests for research: in a caring relationship, it could seem preferable to protect the defenseless cadaver against outsiders – including researchers [50]. In childhood cancer research, however, parents are generally willing to consent on behalf of their children [51], and again it might reflect what could be termed an assessment of relative danger and whether researchers are construed as outsiders or helpers in the specific situation.…”

Uncovering Hidden Emotional Work: Professional Practice in Paediatric Post-Mortem

“…Certain sub-specialities within pathology are overlooked too, for example paediatric post-mortem. This is an emotive and taboo area of post-mortem – particularly in the aftermath of the organ retention scandal of 1999 when it was discovered that bodily organs and tissues from babies and children were being used by some UK hospitals for purposes other than autopsy (Sheach Leith, 2007). While the sociological significance of this sub-speciality has been highlighted (Prior, 1987), it has yet to form the core focus of in-depth empirical research.…”

Why does it matter how we regulate the use of human body parts?

“…This sensitivity derives from the emotional significance of the body for their sense of self-identity, as well as beliefs about the relationship of the physical body to the notion of ‘self’ 18. People exist as a unified mind and body, but while life, as C Don Keyes states, ‘is defined in terms of brain function’ body image and the integrity of that image are vitally important to the mental life 19.…”