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Journal of Medical Ethics
  • [Electronic pages] Ethical reflections on clinical trials with human tissue engineered products

    Ex-vivo tissue engineering is an emerging medical technology. Its aim is to regenerate tissues and organs and to restore them to full physiological activity. Some clinical trials with human tissue engineered products (HTEPs) have been conducted and others will follow. These trials not only have to confirm the therapeutic value of the HTEP, they also have to provide insight in its regenerative activity, its safety and long-term effects. The development of these trials is aggravated by the complexity of the tissue engineering process and product. This paper investigates how this complexity influences the ethical conduct of clinical trials with HTEPs. We focus on the value and validity of the trial, the risk-benefit ratio and the protection of the trial participant. We argue that trials with HTEPs need a robust methodology. The risk-benefit ratio of a new HTEP must be determined and compared with available efficacious therapies. This requires the identification and minimisation of risks associated with tissue engineering. Finally a process as complex as tissue engineering presents serious challenges for the informed consent process, and for the protection of the trial participant during and after the trial.



  • [Electronic pages] What do medical students experience as moral problems during their obstetric and gynaecology clerkship?

    This article reports on moral problems that were raised by medical students as the basis for an ethical case-conference in an obstetrics and gynaecology clerkship. After introducing the issue of teaching clinical ethics, the method of our case-conference is explained. Next, the variety of topics and related moral problems are presented. The article continues with a discussion of three distinct and challenging aspects that characterise obstetrics and gynaecology as a domain for teaching clinical ethics. The conclusion puts forward three significant points our review raises.



  • [Electronic pages] Making a difference: incorporating theories of autonomy into models of informed consent
    Background:

    Obtaining patients’ informed consent is an ethical and legal obligation in healthcare practice. Whilst the law provides prescriptive rules and guidelines, ethical theories of autonomy provide moral foundations. Models of practice of consent, have been developed in the bioethical literature to assist in understanding and integrating the ethical theory of autonomy and legal obligations into the clinical process of obtaining a patient’s informed consent to treatment.

    Aims:

    To review four models of consent and analyse the way each model incorporates the ethical meaning of autonomy and how, as a consequence, they might change the actual communicative process of obtaining informed consent within clinical contexts.

    Methods:

    An iceberg framework of consent is used to conceptualise how ethical theories of autonomy are positioned and underpin the above surface, and visible clinical communication, including associated legal guidelines and ethical rules. Each model of consent is critically reviewed from the perspective of how it might shape the process of informed consent.

    Results and discussion:

    All four models would alter the process of obtaining consent. Two models provide structure and guidelines for the content and timing of obtaining patients’ consent. The two other models rely on an attitudinal shift in clinicians. They provide ideas for consent by focusing on underlying values, attitudes and meaning associated with the ethical meaning of autonomy.

    Conclusions:

    The paper concludes that models of practice that explicitly incorporate the underlying ethical meaning of autonomy as their basis, provide less prescriptive, but more theoretically rich guidance for healthcare communicative practices.



  • [Electronic pages] Suicide by advance directive?

    The medical response to suicide is generally resuscitation, followed by attempts to maximise the patient's recovery. Care is generally withdrawn when it is futile and there is no hope for recovery. Suicidal patients who have completed an advance directive may complicate matters. Should medical providers not resuscitate a patient with an advance directive who has attempted to commit suicide? If stated wishes for care are ignored in the emergency setting, how should decisions be made over time in the event of a successful resuscitation resulting in the need for prolonged therapy counter to the wishes of the advance directive? What are the merits of the stated the wishes of suicidal patient? What if they were depressed at the time of the advance directive? This case highlights the need for consideration of these and other concerns in the care of patients who commit suicide and have an advance directive.



  • [Electronic pages] Challenges of informed choice in organised screening
    Context:

    Despite much research on informed choice and the individuals’ autonomy in organised medical screening, little is known about the individuals’ decision-making process as expressed in their own words.

    Objectives:

    To explore the decision-making process among women invited to a mammography screening programme.

    Setting:

    Women living in the counties of Sør- and Nord-Trøndelag, Norway, invited to the first round of the Norwegian Breast Cancer Screening Program (NBCSP) in 2003.

    Methods:

    Qualitative methods based on eight semistructured focus-group interviews with a total of 69 women aged 50–69 years.

    Results:

    The decision to attend mammography screening was not based on the information in the invitation letter and leaflet provided by the NBCSP. They perceived the invitation letter with a prescheduled appointment as if a decision for mammography had already been made. This was experienced as an aid in overcoming the postponements that easily occur in daily lives. The invitation to mammography screening was embraced as an indication of a responsible welfare state, "like a mother taking care."

    Conclusion:

    In a welfare state where governmental institutions are trusted, mass screening for disease is acknowledged by screening participants as a valued expression of paternalism. Trust, gratitude, and convenience were more important factors than information about benefits, harms, and risks when the women made their decisions to attend screening. These elements should be included in the ethical debates on informed choice in preventive medicine.



  • [Electronic pages] Contractual obligations and the sharing of confidential health information in sport

    As an employee, a sports doctor has obligations to their employer, but also professional and widely accepted obligations of a doctor to the patient (in this case the individual team member). The conflict is evident when sports doctors are asked by an athlete to keep personal health information confidential from the coach and team management, and yet both doctor and athlete have employment contracts specifying that such information shall be shared. Recent research in New Zealand shows that despite the presence of an employment contract, there appears to be a wide range of behaviours among sports doctors when an athlete requests that information about them be kept from team management. Many seem willing to honour requests to keep health information about the athlete confidential, thereby being in breach of the employment contract, while others insist on informing team management against the wishes of the athlete. There are a number of potential solutions to this dilemma from forcing doctors to meet their contractual obligations, to limiting the expectations of the employment contract. This paper suggests that at times it may be appropriate to do both, making the position of the doctor clearer and supporting the ability of this group to resist pressure by coaches and management through having a robust code of ethics.



  • [Electronic pages] Life extension, overpopulation and the right to life: against lethal ethics

    Some of the objections to life-extension stem from a concern with overpopulation. I will show that whether or not the overpopulation threat is realistic, arguments from overpopulation cannot ethically demand halting the quest for, nor access to, life-extension. The reason for this is that we have a right to life, which entitles us not to have meaningful life denied to us against our will and which does not allow discrimination solely on the grounds of age. If the threat of overpopulation creates a rights conflict between the right to come into existence, the right to reproduce, the right to more opportunities and space (if, indeed, these rights can be successfully defended), and the right to life, the latter ought to be given precedence.



  • [Electronic pages] Physicians as healthcare surrogate for terminally ill children

    The parents of some terminally ill children have reported that being asked to authorise removal of life-sustaining measures is akin to being requested to sign a "death warrant". This dilemma leaves families not only enduring the grief of losing a loved one, but also with feelings of ambivalence, anxiety and guilt. A straightforward method by which the parents of terminally ill children can entrust the role of healthcare surrogate to the treating physician is presented. The cornerstone of this paradigm is parental awareness that the physician will act in the child’s best interest, even if that means discontinuing life-sustaining measures. The goal is to mitigate parental guilt and fear of misperception, by self and others, of having given up on their child. From a moral standpoint this concept is an appealing option as it conforms to the four basic principles of medical ethics. While laws in the USA and several European nations prevent members of the medical team from taking on the responsibilities of healthcare surrogate for terminally ill patients, formal and informal precedence for this option already exists in France, The Netherlands, Norway, Sweden, Switzerland, and the Canadian province of Manitoba.



  • [Electronic pages] Sleep better than medicine? Ethical issues related to "wake enhancement"

    This paper deals with new pharmacological and technological developments in the manipulation and curtailment of our sleep needs. While humans have used various methods throughout history to lengthen diurnal wakefulness, recent advances have been achieved in manipulating the architecture of the brain states involved in sleep. The progress suggests that we will gradually become able to drastically manipulate our natural sleep-wake cycle. Our goal here is to promote discussion on the desirability and acceptability of enhancing our control over biological sleep, by illustrating various potential attendant ethical problems. We draw attention to the risks involved, possible conflicts of interests underlying the development of wake enhancement, and the potential impact on accountability for fatigue related errors.



  • [Electronic pages] Sex selection for social purposes in Israel: quest for the "perfect child" of a particular gender or centuries old prejudice against women?

    On 9 May 2005, the Israeli Ministry of Health issued guidelines spelling out the conditions under which sex selection by preimplantation genetic diagnosis (PGD) for social purposes is to be permitted in Israel. This article first reviews the available medical methods for sex selection, the preference for children of a specific gender in various societies and the ethical controversies surrounding PGD for medical and social purposes in different countries. It focuses then on the question of whether procreative liberty or parental responsibility should be the centre of attention in this context. Finally, the article critically examines the new Israeli guidelines and their implications for the women undergoing the necessary medical treatments, for the children born as a result, for other members of the family and for society in general.



  • [Electronic pages] The case for re-thinking incest laws

    The recent case of German siblings Patrick Stübing (age 30 years) and his sister Susan Karolewski (age 22 years) has reignited debate over the criminalisation of sexual intercourse among consanguine descendants. The primary justification for criminalising incest is the purported increased risk of genetic disabilities among offspring, but is criminalising sexual intercourse an empirically sound and proportionate response to this increased risk? To answer this question we must consider the specifics of the harm in question (eg, is it a harm to the child or a societal harm) and the magnitude of the harms of the intervention. The example of incest law has important implications for liberal societies. If we can justify imprisoning consenting adults for choosing partners who will increase the risk of having children with disabilities, then we set a troubling precedent for all couples who may pass on genetic disorders to their children.



  • [Electronic pages] Dutch criteria of due care for physician-assisted dying in medical practice: a physician perspective
    Introduction:

    The Dutch Euthanasia Act (2002) states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient’s suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these criteria in medical practice.

    Methods:

    In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response rate: 56%). Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act.

    Results:

    Of all physicians who had received a request for euthanasia or assisted suicide (75%), 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient’s suffering was unbearable and hopeless (79%) and whether or not the patient’s request was voluntary or well considered (58%).

    Discussion:

    Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient’s subjective perspective(s). However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act.



  • [Electronic pages] Inequalities and healthcare reform in Chile: equity of what?

    Chile has achieved great success in terms of growth and development. However, growing inequalities exist in relation to income and health status. The previous Chilean government began to reform the healthcare system with the aim of reducing health inequities. What is meant by "equity" in this context? What is the extent of the equity aimed for? A normative framework is required for public policy-makers to consider ideas about fairness in their decisions about healthcare reform. This paper aims to discuss the main features of the Chilean healthcare reform and their implications for such a normative framework.



  • [Electronic pages] Increasing the amount of payment to research subjects

    This article discusses some ethical issues that can arise when researchers decide to increase the amount of payment offered to research subjects to boost enrollment. Would increasing the amount of payment be unfair to subjects who have already consented to participate in the study? This article considers how five different models of payment—the free market model, the wage payment model, the reimbursement model, the appreciation model, and the fair benefits model—would approach this issue. The article also considers several practical problems related to changing the amount of payment, including determining whether there is enough money in the budget to offer additional payments to subjects who have already enrolled, ascertaining how difficult it will be to re-contact subjects, and developing a plan of action for responding to subjects who find out they are receiving less money and demand an explanation.



  • [Electronic pages] Reproductive cloning in humans and therapeutic cloning in primates: is the ethical debate catching up with the recent scientific advances?

    After years of failure, in November 2007 primate embryonic stem cells were derived by somatic cellular nuclear transfer, also known as therapeutic cloning. The first embryo transfer for human reproductive cloning purposes was also attempted in 2006, albeit with negative results. These two events force us to think carefully about the possibility of human cloning which is now much closer to becoming a reality. In this paper we tackle this issue from two sides, first summarising what scientists have achieved so far, then discussing some of the ethical arguments in favour and against human cloning which are debated in the context of policy making and public consultation. Therapeutic cloning as a means to improve and save lives has uncontroversial moral value. As to human reproductive cloning, we consider and assess some common objections and failing to see them as conclusive. We do recognise, though, that there will be problems at the level of policy and regulation that might either impair the implementation of human reproductive cloning or make its accessibility restricted in a way that could become difficult to justify on moral grounds. We suggest using the time still available before human reproductive cloning is attempted successfully to create policies and institutions that can offer clear directives on its legitimate applications on the basis of solid arguments, coherent moral principles, and extensive public consultation.



  • [Electronic pages] Informed consent in clinical research in France: assessment and factors associated with therapeutic misconception
    Background:

    Informed consent in clinical research is mandated throughout the world. Both patient subjects and investigators are required to understand and accept the distinction between research and treatment.

    Aim:

    To document the extent and to identify factors associated with therapeutic misconception in a population of patient subjects or parent proxies recruited from a variety of multicentre trials (parent studies).

    Patients and methods:

    The study comprised two phases: the development of a questionnaire to assess the quality of informed consent and a survey of patient subjects based on this questionnaire.

    Results:

    A total of 303 patient subjects or parent proxies were contacted and 279 questionnaires were analysed. The median age was 49.5 years, sex ratio was 1 and 61% of respondents were professionally active. Overall memorisation of the oral or written communication of informed consent was good (69–97%), and satisfaction with the process was around 70%. Therapeutic misconception was present in 70% of respondents, who expected to receive better care and ignored the consequence of randomisation and treatment comparisons. This was positively associated with the acuteness and severity of the disease.

    Conclusion:

    The authors suggest that the risk of therapeutic misconception be specifically addressed in consent forms as an educational tool for both patients and investigators.



  • [Electronic pages] The search for clarity in communicating research results to study participants

    Current guidelines on investigators' responsibilities to communicate research results to study participants may differ on (1) whether investigators should proactively re-contact participants, (2) the type of results to be offered, (3) the need for clinical relevance before disclosure, and (4) the stage of research at which results should be offered. Lack of consistency on these issues, however, does not undermine investigators' obligation to offer to disclose research results: an obligation rooted firmly in the principle of respect for research participants.



  • [Electronic pages] The remote prayer delusion: clinical trials that attempt to detect supernatural intervention are as futile as they are unethical

    Extreme rates of premature death prior to the advent of modern medicine, very low rates of premature death in First World nations with low rates of prayer, and the least flawed of a large series of clinical trials indicate that remote prayer is not efficacious in treating illness. Mass contamination of sample cohorts renders such clinical studies inherently ineffectual. The required supernatural and paranormal mechanisms render them implausible. The possibility that the latter are not benign, and the potentially adverse psychological impact of certain protocols, renders these medical trials unethical. Resources should no longer be wasted on medical efforts to detect the supernatural and paranormal.



  • [Electronic pages] Ethical review of undergraduate student research in the NHS: evolution of the system could benefit us all


  • [Electronic pages] Clinical research projects at a German medical faculty: follow-up from ethical approval to publication and citation by others
    Background:

    Only data of published study results are available to the scientific community for further use such as informing future research and synthesis of available evidence. If study results are reported selectively, reporting bias and distortion of summarised estimates of effect or harm of treatments can occur. The publication and citation of results of clinical research conducted in Germany was studied.

    Methods:

    The protocols of clinical research projects submitted to the research ethics committee of the University of Freiburg (Germany) in 2000 were analysed. Published full articles in several databases were searched and investigators contacted. Data on study and publication characteristics were extracted from protocols and corresponding publications.

    Results:

    299 study protocols were included. The most frequent study design was randomised controlled trial (141; 47%), followed by uncontrolled studies (61; 20%), laboratory studies (30; 10%) and non-randomised studies (29; 10%). 182 (61%) were multicentre studies including 97 (53%) international collaborations. 152 of 299 (51%) had commercial (co-)funding and 46 (15%) non-commercial funding. 109 of the 225 completed protocols corresponded to at least one full publication (total 210 articles); the publication rate was 48%. 168 of 210 identified publications (80%) were cited in articles indexed in the ISI Web of Science. The median was 11 citations per publication (range 0–1151).

    Conclusions:

    Results of German clinical research projects conducted are largely underreported. Barriers to successful publication need to be identified and appropriate measures taken. Close monitoring of projects until publication and adequate support provided to investigators may help remedy the prevailing underreporting of research.



  • [Editorial] Oscar Pistorius, enhancement and post-humans


  • [Clinical ethics] Deconstructing DNR


  • [Clinical ethics] The do-not-resuscitate order: associations with advance directives, physician specialty and documentation of discussion 15 years after the Patient Self-Determination Act
    Background:

    Since the passage of the Patient Self-Determination Act, numerous policy mandates and institutional measures have been implemented. It is unknown to what extent those measures have affected end-of-life care, particularly with regard to the do-not-resuscitate (DNR) order.

    Methods:

    Retrospective cohort study to assess associations of the frequency and timing of DNR orders with advance directive status, patient demographics, physician’s specialty and extent of documentation of discussion on end-of-life care.

    Results:

    DNR orders were more frequent for patients on a medical service than on a surgical service (77.34% vs 64.20%, p = 0.02) and were made earlier in the hospital stay for medicine than for surgical patients (adjusted mean ratio of time from DNR orders to death versus total length of stay 0.30 for internists vs 0.21 for surgeons, p = 0.04). 22.18% of all patients had some form of an advance directive in their chart, yet this variable had no impact on the frequency or timing of DNR ordering. Documentation of DNR discussion was significantly associated with the frequency of DNR orders and the time from DNR to death (2.1 days with no or minimal discussion vs 2.8 days with extensive discussion, p<0.01).

    Conclusions:

    The physician’s specialty continues to have a significant impact on the frequency and timing of DNR orders, while advance directive status still has no measurable impact. Additionally, documentation of end-of-life discussions is significantly associated with varying DNR ordering rates and timing.



  • [Clinical ethics] Information and consent for newborn screening: practices and attitudes of service providers
    Objectives:

    To gather information about the practices and attitudes of providers of maternity care with respect to informed consent for newborn screening (NBS).

    Methods:

    A questionnaire concerning information provision and parental consent for NBS was sent to all 1036 registered lead maternity carers (LMC) in New Zealand.

    Results:

    93% of LMC in New Zealand report giving parents information concerning NBS, most frequently after delivery (73%) and in the third trimester (60%). The majority (85%) of LMC currently obtain some form of consent (verbal or written) for NBS from parents and consider this to be the ideal approach (94%). Despite this a significant minority of LMC (23%) reported considering that NBS should be mandatory. Of those in our survey who believed that NBS should be mandatory, paradoxically most (89%) still believed that some form of parental consent should be obtained; of those who believed testing should not be mandatory, only a small proportion (10%) would accept parental refusal without question.

    Conclusions:

    When the results of this survey are considered in conjunction with existing evidence there appears to be a consensus that good quality information in the prenatal period should be an integral part of any NBS programme. The issue of consent is more complex and there is less agreement on the preferred degree of parental involvement in decisions to allow babies to undergo NBS. A policy that both strongly recommends NBS but also allows parental choice appears to be most consistent with the views of LMC in this survey.



  • [Ethics] Money in--babies out: assessing the long-term economic impact of IVF-conceived children


  • [Ethics] In defence of Kant's moral prohibition on suicide solely to avoid suffering

    In Ian Brassington’s article in a previous issue of this journal, he argues that suicide for the purpose of avoiding suffering is not, as Kant has contended, contrary to the moral law. Brassington’s objections are not cogent because they rely upon the exegetically incorrect premise that according to Kant the priceless value of personhood is in the noumenal world that we have no perception of. On the basis of Kant’s normative, metaphysical and epistemological theory, I argue, contrary to Brassington, that according to Kant personhood’s moral value is explicitly in the sensible, phenomenal realm. While I argue that suicide solely to avoid suffering is immoral, I show that Kant’s normative system allows some acts of suicide to be morally permissible. In the course of the discussion of the value of humanity’s rationality and the immorality of suicide, I will discuss the broader modern medical ethical implications of Kant’s arguments, such as the moral impermissibility of using rationality depriving drugs, such as ketamine, solely to avoid pain.



  • [Ethics] What reasons do those with practical experience use in deciding on priorities for healthcare resources? A qualitative study
    Background:

    Priority setting is necessary in current healthcare services. Discussion of fair process has highlighted the value of developing reasons for allocation decisions on the basis of experience gained from real cases.

    Aim:

    To identify the reasons that those with experience of real decision-making concerning resource allocation think relevant in deciding on the priority of a new but expensive drug treatment.

    Methods:

    Semistructured interviews with members of committees with responsibility for making resource allocation decisions at a local level in the British National Health Service, analysed using modified grounded theory.

    Results:

    22 interviews were carried out. 14 reasons were identified. Four reasons were almost universally considered most important: cost effectiveness; clinical effectiveness; equality and gross cost. No one reason was considered dominant. Some considerations, such as political directives and fear of litigation, were thought by many participants to distort decision-making. There was a substantial lack of agreement over the relevance of some reasons, such as the absence of alternative treatment for the condition.

    Conclusions:

    There is a clear consensus on the importance and role of a limited number of reasons in allocation decisions among participants. A focus on the process of decision-making, however, does not obviate the need for those involved in the process to engage with problematical ethical issues, nor for the importance of further ethical analysis.



  • [Ethics] Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis
    Aim:

    Patients with advanced cancer need information about end-of-life treatment options in order to make informed decisions. Clinicians vary in the frequency with which they initiate these discussions.

    Patients and methods:

    As part of a long-term longitudinal study, patients with an expected 2-year survival of less than 50% who had advanced gastrointestinal or lung cancer or amyotrophic lateral sclerosis (ALS) were interviewed. Each patient’s medical record was reviewed at enrollment and at 3 months for evidence of the discussion of patient wishes concerning ventilator support, artificial nutrition and hydration (ANH), resuscitation (DNR) and hospice care. A Kaplan–Meier analysis was also performed and 2-year survival calculated.

    Results:

    60 cancer and 32 ALS patients were enrolled. ALS patients were more likely than cancer patients to have evidence of discussion about their wishes for ventilator support (31% vs 0%, p<0.001), ANH (38% vs 0%, p<0.001), DNR (25% vs 0%, p<0.001) and hospice care (22% vs 5%, p = 0.03). At 6 months, 91% of ALS patients were alive compared with 62% of cancer patients; at 2 years, 63% of ALS patients were alive compared with 23% of cancer patients (p<0.001).

    Conclusions:

    Cancer patients were less likely than ALS patients to have had documented advanced care planning discussions despite worse survival. This may reflect perceptions that ALS has a more predictable course, that advanced cancer has a greater number of treatment options, or differing views about hope. Nevertheless, cancer patients may be less adequately prepared for end-of-life decision-making.



  • [Ethics] From compulsory to voluntary immunisation: Italy's National Vaccination Plan (2005-7) and the ethical and organisational challenges facing public health policy-makers across Europe

    Increasing geographical mobility and international travel augment the ease and speed by which infectious diseases can spread across large distances. It is therefore incumbent upon each state to ensure that immunisation programmes are effective and that herd immunity is achieved. Across Europe, a range of immunisation policies exist: compulsion, the offer of financial incentives to parents or healthcare professionals, social and professional pressure, or simply the dissemination of clear information and advice. Until recently, immunisation against particular communicable diseases was compulsory in Italy. The Italian National Vaccination Plan (NVP) (2005–7) paved the way for regions to suspend the sanctions associated with compulsory vaccinations for children when certain criteria are met—for example when immunisation coverage is high and when effective monitoring/surveillance systems are in place—and thus marked a milestone in the move from compulsory to voluntary immunisation. The forthcoming NVP for 2008–10 confirms the liberal approach to vaccination in Italy as it entrusts to the regions responsibility for the achievement and maintenance of herd immunity. This paper reviews the arguments for and against compulsory and voluntary immunisation in relation to the Italian NVP (2005–7) and in the context of the diverse immunisation policies that exist across Europe. It concludes with cautious support for the NVP and an associated shift from compulsory to voluntary immunisation in Italy, and draws similarities between issues concerning regional variation in immunisation policy in Italy and national variation in immunisation policy across Europe and beyond.



  • [Ethics] To see for myself: informed consent and the culture of openness

    Informed consent needs to be practised within a culture of openness if it is to enhance public trust in medical procedures around death. Openness should entail patients not just receiving information from doctors, but also having the right to see certain medical procedures. This article proposes in particular that it would be desirable for the public to be allowed to attend an autopsy of a person they do not know. Evidence from the UK, where members of the public may go backstage to witness the process of cremation, the other technical process in which dead bodies are violently but legitimately assaulted, suggests benefits from a policy of openness. When a family consents to cremation in Britain, their consent is only minimally informed, but the system has nothing to hide, and trust is high. This suggests that the opportunity for lay people also to witness certain medical procedures might do more to restore public trust in medical procedures around death than a narrow interpretation of informed consent in which information is controlled by the profession.