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.
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ABSTRACT: Organ transplantation is an innovative 21st century medical therapy that offers the potential to enhance and save life. In order to do so it depends on a supply of organs, usually from cadaveric donors who have suffered brain stem death. Regardless of whether and how the deceased recorded their wishes about donation, health professionals will approach the bereaved relatives, before organs are removed. In this article, the results from 19 semi-structured interviews with Scottish donor families will be presented. These accounts will focus exclusively on the families' beliefs about death, the dead body and bonds with the deceased, and whether these affected the donation decision or the organs donated. What the families said about brain stem death (BSD); how and when they understood that death had occurred; and whether the families thought that death caused a 'disembodiment' (that the self was no longer embodied) will be explored. Finally, attention will turn to the bereaved's previous relationship with the embodied person. I conclude that the phenomenology of embodiment, death and organ transplantation offers new answers to the question of 'Who am I'? That is, in order to understand what identity is, one might look for what it is that is lost at death; the body, the self and relationships with others.Sociology of Health & Illness 02/2005; 27(1):92-113. · 1.88 Impact Factor
Article: Falling neonatal autopsy rates.BMJ (Clinical research ed.). 04/2002; 324(7340):749-50.
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ABSTRACT: To 'own' a person is considered an infringement of human rights, but we suggest that concepts of ownership influence interactions between parents and staff when a child is admitted to hospital. This paper aims to stimulate debate and contains an explanation of the exploration of the literature for research and discussion of ownership of the child. A wide variety of library indexes, databases and populist media were examined although it was impossible to examine all literature which may have contained references to this topic, and, apart from databases which contained abstracts in English, we could not include literature written in any language other than English, Swedish, and Icelandic. We found no research that examines how concepts of ownership of a child affects communication between health professionals and parents and, ultimately, the delivery of health care. This paper begins discussion on the issues. Historical literature shows that ownership of humans has been a part of many cultures, and parents were once considered to own their children. Ownership of another has legal connotations, for instance in guardianship struggles of children during marriage breakup and in ethical debates over surrogacy and products of assisted conception. Within health care, it becomes a contentious issue in transplantation of body parts, in discourse on autonomy and informed consent, and for religious groups who refuse blood transfusions. In health care, models such as family centred care and partnership in care depend on positive communication between parents and staff. If a hospital staff member feels that he/she owns a child for whom he/she is caring, then conflict between the staff member and the parents over who has the 'best interests of the child' at heart is possible. We encourage debate about concepts of who owns the hospitalized child - the parents or the staff? Should it be argued at all? Is the whole concept of ownership of another, be it adult or child, the ethical antithesis to modern beliefs about human rights? Comment on this issue is invited.Journal of Advanced Nursing 03/2003; 41(3):213-22. · 1.53 Impact Factor