Organ Retention Scandals Research Articles

Pathology and forensic science: Dignity, respect, and the dead body

AbstractThis perspective considers the forensic examination of deceased bodies via the medico‐legal autopsy. It is argued that the decisions we make about what we do with, and to, deceased bodies and body parts is, and should be, limited by the need to treat bodies with dignity and respect. The treatment of parts of bodies has been explored in bioethics, substantially due to organ retention scandals bringing this to the public and political attention. But these cases—although important—represent extremes. This perspective therefore focuses on routine death investigations and the extent to which scientific method should be limited because of the competing interests in the deceased body and its treatment. It is argued that how we treat bodies/body parts matters because they represent once‐living people with contexts, histories, and relationships. They had, and perhaps still have, value as human persons. As humans, we share complex relationships and have different views and interpretations of what our duties are to each other. Dignity and respect aid by providing baseline standards, and are reflected as such in professional codes and regulations. However, the system is imbued with sufficient discretion that it is impossible to achieve consistency of standards or practice. This means that the treatment of deceased bodies in forensic science will differ substantially depending on both context and the practitioners involved.This article is categorized under: Forensic Medicine > Medicolegal Death Investigation Systems

Running a postmortem service--a business case and clinical experience.

The purpose of the postmortem examination is to offer answers to explain the cause and manner of death. In the case of perinatal, infant and paediatric postmortem examinations, the goal is to identify unsuspected associated features, to describe pathogenic mechanisms and new conditions, and to evaluate the clinical management and diagnosis. Additionally, the postmortem examination is useful to counsel families regarding the probability of recurrence in future pregnancies and to inform family planning. Worldwide the rate of paediatric autopsy examinations has significantly declined during the last few decades. Religious objections to postmortem dissection and organ retention scandals in the United Kingdom provided some of the impetus for a search for non-invasive alternatives to the traditional autopsy; however, until recently, imaging studies remained an adjunct to, rather than a replacement for, the traditional autopsy. In 2012, Sheffield Children's Hospital National Health Service Foundation Trust set up the service provision of minimally invasive fetal, perinatal and neonatal autopsy, while a postmortem imaging service has been running in Melbourne, Australia, since 2008. Here we summarise the essentials of a business case and practical British and Australian experiences in terms of the pathological and radiologic aspects of setting up a minimally invasive clinical service in the United Kingdom and of developing a clinical postmortem imaging service as a complementary tool to the traditional autopsy in Australia.

Organ Retention and Bereavement: Family Counselling and the Ethics of Consultation

Taking organisational responses to the ‘organ retention scandals’ in the United Kingdom and Australia as a starting point, this paper considers the role of social welfare workers within the medico-legal system. Official responses to the inquiries of the late 1990s have focused on issues of consent and process-transparency, leaving unaddressed concerns expressed by the bereaved about the impact of organ retention on both their experience of grief and on the deceased themselves. A review of grief and embodiment literature suggests that such concerns are consistent with the significance of relationship, attachment and identity within grief resolution—however that last problematic term is defined. The case example of an Australian coronial jurisdiction which has attempted to deal with some of these issues through mandating the discussion of autopsy and organ retention processes by grief counsellors with bereaved families is then provided. A distinction is drawn between these discussions and the seeking of consent. The discussion concludes by considering the ambiguous nature of the social welfare role within this contested field, suggesting that this ambiguity, while perhaps a source of flexibility in practice, may itself relate to a lack of clear information about the needs of the bereaved. This paper contributes to the development of that knowledge and offers some necessarily tentative recommendations regarding social welfare practice in this challenging arena.

749 Neonatal Post-Mortem Rates: A 10 Year Experience at a Tertiary Centre in the Uk

Background: Post-mortem examination is important in determining cause of death and can add addition information even when the cause is felt to be apparent. The organ retention scandal in 1999 has changed the perception of post-mortems particularly in children.Aims: To determine the post-mortem rates for babies who have died on our neonatal unit and to see if there are any differences between term and preterm babies.Methods: All babies who died on our neonatal unit from January 2000 to December 2009 were identified using a combination of our neonatal databases, admissions book and death certificates. Post-mortem examinations were determined from our neonatal database and mortuary records.Results: There were 329 deaths and 80 postmortems performed during this period (24%). The yearly post-mortem rate for all babies varies from 13 to 39 percent. Over the 10 year period, rates were 31 percent for term babies and 23 percent in preterm infants. Rates in extreme preterm infants were only 17 percent. There is a statistically significant difference between the post-mortem rates in term, 29-36 week gestation and extreme preterm infants.Conclusion: Our post-mortem rates are lower than expected and vary from year to year. The rates are particularly low in the extreme preterm infants. The reasons for this are likely to be complex but include parents feeling they already know why their baby has died and also because they feel they do not wish to put their preterm babies through further suffering.

Pathology: coming in from the cold

Following the UK's organ retention scandals that occurred a decade ago, politicians unleashed a deluge of well-intentioned but naïve and unnecessarily burdensome regulations that have progressively stymied human tissue-based research, stifling development of improved diagnostic and prognostic tests as well as discovery of new treatments based on sound knowledge of human-specific biology. For the UK to maintain a leading role in medical research, more sensible levels of regulation need to be introduced that recognise differences between tissue from donors who have passed-away and surgical tissue that is surplus to diagnostic requirements and that otherwise will be incinerated. While it is important to reassure the public that research using their tissues will be conducted within an approved ethical framework, it is equally important to ensure that, as hospital staff and academic researchers, we are able to fulfil our unwritten covenant with patients to do our utmost to seek better diagnostic assays and more predictive prognostic indicators, while collaborating with our colleagues in academia and industry and hence bring hope to patients with illnesses for which no effective treatments are yet available. There is a clear case for introducing an opt-out system as the default to allow all surplus surgical tissues to be immediately available for research, concomitant with an education campaign. This is the optimal and most ethical approach to ensure the wishes of the vast majority of patients are respected by allowing their residual surgical tissues and relevant clinical information to be made available for research without the current levels of obstruction and hindrance.

The CNEP trial: how a good trial was turned rotten

The CNEP trial: how a good trial was turned rotten

A Policy for the Retention and Extended Examination of Organs at Autopsy*

Recent organ retention scandals and law suits have created a focus on the practice of saving postmortem tissues for extended examination or research purposes. The New Mexico Office of the Medical Investigator (OMI) established a policy to notify families about organ retention and the subsequent disposition of the tissue. The OMI examined the success of this policy in regards to the retention of brains for extended examination by analyzing data abstracted from verbal consent forms from 2003 to 2006. During this time, 715 cases were identified as needing an extended examination of the brain. The percentages of brains saved in any given year, as a percent of the total number of autopsies performed that year, were: 2003 6.5%, 2004 10.4%, and 2005 11.8%. The disposition was cremation in 79% of cases, release with the body after a determined period of time in 14%, and cut fresh in 4%. In conclusion, the instigation of a policy on the verbal notification of the next of kin when organs are retained can be successfully implemented.

Radiation protection in medicine: ethical framework revisited

The ethical framework within which medicine operates has changed radically over the last two decades. This has been stimulated by events leading to controversy, such as the infant organ retention scandals; concerns about blood products; self regulation of medical practice in the wake of the Harold Shipman Enquiry in the UK; and many other events. It has become obvious following investigations and/or public enquiries that a gap has opened up between what is acceptable to the public on the one hand, and what appears reasonable to, or is at least accepted by, the professionals involved on the other. This paper reviews these issues and some conclusions of a workshop held to consider them. It places the developments in the context of the idea that the approach to problems and communication in a group of people/professionals such as doctors, radiologists, radiation protection specialists, or even the general public may be regarded as a 'culture'. Current practice of radiation protection in medicine is examined in the light of these considerations.

Needlestuck

Needlestuck

Consent and nothing but consent? The organ retention scandal

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.

‘Bones of contention’: a donor register for temporal bone donation?

Temporal bone dissection is essential training for otological surgery. Organ retention scandals have made it difficult to obtain consent for cadaveric temporal bone removal. The current literature does not address the means of acquiring a steady supply of cadaveric temporal bones for medical education and training. The US national temporal bone registry has established a temporal bone donor bank for medical education and research. Could a similar programme in the UK be an answer to the paucity of temporal bones? (1) To ascertain the degree of interest amongst our regional patient population in a 'living will' pledge for temporal bone donation for medical education and research. (2) To delineate a demographic profile of potential temporal bone donors. One thousand questionnaires were distributed to patients and relatives attending out-patient clinics; 920 people responded. Seventy per cent of respondents supported temporal bone donation for medical education and research. Potential temporal bone donors tended to be ENT clinic attenders, to suffer from hearing difficulties or to have had previous ear surgery (p<0.001). Strong support also came from non-ENT clinic attenders. There was strong support amongst our regional patient population for a 'living will' pledge for temporal bone donation for medical education and research. Based on our donor profile, we propose a temporal bone donor programme, starting on a regional basis with possible expansion nationwide. This programme would recruit donors from amongst patients attending ENT out-patient clinics, as a long term solution to improve the supply of temporal bones.

A Holistic Approach to Clinical and Research Decision-Making: Lessons from the UK Organ-Retention Scandals

A Holistic Approach to Clinical and Research Decision-Making: Lessons from the UK Organ-Retention Scandals

The Human Tissue Act 2004: Innovative Legislation – Fundamentally Flawed or Missed Opportunity?

In November 2004 Royal Assent was finally given to the Human Tissue Act which was passed in response to the organ retention scandals at Alder Hey hospital and other hospitals around the UK. At first glance it may appear to set many of the concerns raised in the Bristol Interim Inquiry and Alder Hey Inquiry to rest. But on closer inspection a more complex position emerges. The paper examines the extent to which it can be regarded as a groundbreaking piece of legislation clarifying a notoriously uncertain area of law or whether in the long term it will be viewed as a fundamentally flawed Act and a missed opportunity.

Dead, but not buried: bodies, burial and family conflicts

While recent public attention has focused on disputes concerning the fate of the dead such as the Bristol and Alder Hey organ retention scandals, this paper considers a much less publicised area of dispute which has nevertheless generated a significant amount of case law and potentially affects a much wider proportion of society. The paper looks at conflicts which arise when relatives cannot agree on how to bury their dead, the motives behind such disputes and the factors which influence their resolution. It examines the legal framework which has been applied by courts to date, proposes alternative solutions to this framework and questions the potential impact of the Human Rights Act 1998 on family burial conflicts.

"Bones of Contention". The donation of temporal bones for dissection after the organ-retention scandals.

It is essential for the Otologist in training to become familiar with the anatomy of the temporal bone. Generations of trainees have acquired this knowledge, together with basic surgical skills and techniques by dissection of cadaver temporal bones. In recent years, however, the supply of temporal bones for dissection has become a contentious issue in many British hospitals. Media and public attention has recently focused on issues surrounding the retention of human tissues following post-mortem examinations. In response, the Chief Medical Officer, the Royal College of Pathologists in the UK, the Faculty of Pathology of the Royal College of Physicians in Ireland, the British Medical Association, and other bodies have issued new guidelines that are of relevance to the Otolaryngologist. This paper gives details of some of the UK guidelines and where they can be accessed. A copy of the Royal College of Pathologists preferred post-mortem consent form is presented. The authors' experience in Manchester is discussed and details of an information leaflet on the subject of temporal bone donation are given. It is concluded that, with knowledge of the existing guidelines and good communication with other hospital colleagues, as well as families of the deceased, it is still possible legally to obtain temporal bones for dissection.

The repercussions of the organ retention scandal.

I do not think anybody could have predicted the effect of the report of the inquiry into the Alder Hey Children's Hospital organ scandal (Department of Health (DoH), 2001). At the time it seemed that politicians were using the publicity to deflect attention away from their own shortcomings, and the media was obsessed with exposing yet another weakness in the NHS.