Consent and nothing but consent? The organ retention scandal

School of Applied Social Studies, Faculty of Health and Social Care, The Robert Gordon University, Aberdeen, UK.
Sociology of Health & Illness (Impact Factor: 1.88). 12/2007; 29(7):1023-42. DOI: 10.1111/j.1467-9566.2007.01031.x
Source: PubMed


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.

6 Reads
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: i ABSTRACT This thesis explores nurses' conceptualisation of dementia and discusses the relationship between these understandings and nursing practice. Using the reflexive sociological approach of French scholar Pierre Bourdieu, the study seeks to advance practice through the enhancement of theoretical understandings. Data were collected in a range of inpatient clinical areas in Scotland using focus groups, individual interviews and observation. A range of nurses contributed, reflecting views and understandings from inpatient areas run by both general medical and mental health services. Nurses were found to conceptualise dementia in four main ways; as a disease, as a memory problem, as confusion and finally as a journey. These four conceptualisations are addressed in turn and the ways in which they inform and relate to practice are discussed. Limitations to practice arising from the nurses conceptualisations are also highlighted. Dominant approaches to care are outlined throughout the thesis, with the medical model, individualised care, person-centred dementia care and palliative care all being discussed in light of the nurses' understandings of dementia.
  • [Show abstract] [Hide abstract]
    ABSTRACT: Many studies have explored public perspectives on when and how to provide informed consent to biobank research and when to get feedback on research results. Little has been done to explore overarching trends in these studies. The article is based on a critical reading of the literature found through Medline searches and the PRIVILEGED project compilation of empirical studies. I suggest that tissue type, procurement situation including who is asked to provide consent, and the biobank's geographical, social and historical context influence how various potential donors view the issues of consent, re-consent, and feedback of research results. In light of this, universal ethical standards for informed consent to and feedback of research results from biobank research seem to run contrary to the diversity of perceptions and expectations among different donors. To respect donor interests, it is necessary to pay more attention to diversity with regard to biobank types and different contexts for donation. We should avoid assuming that words like 'biobank' and 'donor' can be used in a generic sense - always referring to the same - if we wish to respect and care for the diverse group of individuals who comprise the donating public.
    Public Health Genomics 11/2009; 13(6):345-52. DOI:10.1159/000262329 · 2.21 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: What will become of our earthly remains? What happens to our bodies during and after the various forms of cadaver disposal available? Who controls the fate of human remains? What legal and moral constraints apply? Legal scholar Norman Cantor provides a graphic, informative, and entertaining exploration of these questions. After We Die chronicles not only a corpse's physical state but also its legal and moral status, including what rights, if any, the corpse possesses. In a claim sure to be controversial, Cantor argues that a corpse maintains a "quasi-human status" granting it certain protected rights - both legal and moral. One of a corpse's purported rights is to have its predecessor's disposal choices upheld. After We Die reviews unconventional ways in which a person can extend a personal legacy via their corpse's role in medical education, scientific research, or tissue transplantation. This underlines the importance of leaving instructions directing post-mortem disposal. Another cadaveric right is to be treated with respect and dignity. After We Die outlines the limits that "post-mortem human dignity" poses upon disposal options, particularly the use of a cadaver or its parts in educational or artistic displays. Contemporary illustrations of these complex issues abound. In 2007, the well-publicized death of Anna Nicole Smith highlighted the passions and disputes surrounding the handling of human remains. Similarly, following the 2003 death of baseball great Ted Williams, the family in-fighting and legal proceedings surrounding the corpse's proposed cryogenic disposal also raised contentious questions about the physical, legal, and ethical issues that emerge after we die. In the tradition of Sherwin Nuland's How We Die, Cantor carefully and sensitively addresses the post-mortem handling of human remains.
Show more

Similar Publications


6 Reads