Brain organoid research raises ethical challenges not seen in other forms of stem cell research. Given that brain organoids partially recapitulate the development of the human brain, it is plausible that brain organoids could one day attain consciousness and perhaps even higher cognitive abilities. Brain organoid research therefore raises difficult questions about these organoids' moral status – questions that currently fall outside the scope of existing regulations and guidelines. This paper shows how these gaps can be addressed. We outline a (...) moral framework for brain organoid research that can address the relevant ethical concerns without unduly impeding this important area of research. (shrink)

Genomic research can reveal ‘unsolicited’ or ‘incidental’ findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grounded in the duty of easy rescue, to return certain kinds of unsolicited findings to research participants. It is less widely thought that researchers have a moral obligation to actively look for health-related findings. This paper examines whether there is a moral obligation, grounded in the duty of easy rescue, to actively hunt (...) for genomic secondary findings. We begin by showing how the duty to disclose individual research findings can be grounded in the duty of easy rescue. Next, we describe a parallel moral duty, also grounded in the duty of easy rescue, to actively hunt for such information. We then consider six possible objections to our argument, each of which we find unsuccessful. Some of these objections provide reason to limit the scope of the duty to look for secondary findings, but none provide reason to reject this duty outright. We argue that under a certain range of circumstances, researchers are morally required to hunt for these kinds of secondary findings. Although these circumstances may not currently obtain, genomic researchers will likely acquire an obligation to hunt for secondary findings as the field of genomics continues to evolve. (shrink)

Antimicrobial resistance is one of the greatest public health crises of our time. The natural biological process that causes microbes to become resistant to antimicrobial drugs presents a complex social challenge requiring more effective and sustainable management of the global antimicrobial commons—the common pool of effective antimicrobials. This special issue of Health Care Analysis explores the potential of two legal approaches—one long-term and one short-term—for managing the antimicrobial commons. The first article explores the lessons for antimicrobial resistance that can be (...) learned from recent climate change agreements, and the second article explores how existing international laws can be adapted to better support global action in the short-term. (shrink)

Is it justified to detect minor genetic aberrations before birth and terminate pregnancies based upon such information? We present the case of a woman who wanted Prenatal Diagnosis to detect whether her female fetus was a Haemophilia mutation carrier. Such carriers are usually healthy.She wished to eradicate the Haemophilia mutation from her family to avoid future generations being affected and to protect her children from having to go through PND themselves. We explore existing practice guidelines, public attitudes and possible objections (...) to providing PND for minor abnormalities. We argue that in a society where couples have considerable autonomy relating to decisions about the fetus at least until viability, the routine restriction of PND for minor genetic abnormalities would be an unjust infringement of individual liberty. (shrink)

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that the aim of OPS is consistent with the proper goals of medicine to promote well-being, and therefore could ethically be offered to non-binary adults in principle; there are additional equity-based reasons to offer OPS to non-binary adults as a group; and the ethical defensibility (...) of facilitating individual requests for OPS from non-binary adults also depends on other relevant considerations, including the balance of potential benefits over harms for that specific patient, and whether the patient’s request is substantially autonomous. Although the broadly principlist ethical approach we take can be used to analyse other cases of non-binary adults requesting OPS apart from the case we evaluate, we highlight that the outcome will necessarily depend on the individual’s context and values. However, such clinical provision of OPS should ideally be within the context of a properly designed research study with long-term follow-up and open publication of results. (shrink)

Strategies to increase influenza vaccination rates have typically targeted healthcare professionals and individuals in various high-risk groups such as the elderly. We argue that they should focus on increasing vaccination rates in children. Because children suffer higher influenza incidence rates than any other demographic group, and are major drivers of seasonal influenza epidemics, we argue that influenza vaccination strategies that serve to increase uptake rates in children are likely to be more effective in reducing influenza-related morbidity and mortality than those (...) targeting HCPs or the elderly. This is true even though influenza-related morbidity and mortality amongst children are low, except in the very young. Further, we argue that there are no decisive reasons to suppose that children-focused strategies are less ethically acceptable than elderly or HCP-focused strategies. (shrink)

Recent research has relied on trolley-type sacrificial moral dilemmas to study utilitarian versus nonutili- tarian modes of moral decision-making. This research has generated important insights into people’s attitudes toward instrumental harm—that is, the sacrifice of an individual to save a greater number. But this approach also has serious limitations. Most notably, it ignores the positive, altruistic core of utilitarianism, which is characterized by impartial concern for the well-being of everyone, whether near or far. Here, we develop, refine, and validate a (...) new scale—the Oxford Utilitarianism Scale—to dissociate individual differences in the ‘negative’ (permissive attitude toward instrumental harm) and ‘positive’ (impartial concern for the greater good) dimensions of utilitarian thinking as manifested in the general population. We show that these are two independent dimensions of proto-utilitarian tendencies in the lay population, each exhibiting a distinct psychological profile. Empathic concern, identification with the whole of humanity, and concern for future generations were positively associated with impartial beneficence but negatively associated with instrumental harm; and although instrumental harm was associated with subclinical psychopathy, impartial beneficence was associated with higher religiosity. Importantly, although these two dimensions were independent in the lay population, they were closely associated in a sample of moral philosophers. Acknowledging this dissociation between the instrumental harm and impartial beneficence components of utilitarian thinking in ordinary people can clarify existing debates about the nature of moral psychology and its relation to moral philosophy as well as generate fruitful avenues for further research. (shrink)

Why potential parents should select the best child of possible children, and the necessity of a dialogue about the context of a reproductive decision.The principle of Procreative Beneficence is the principle of selecting the best child of the possible children one could have. This principle is elaborated on and defended against a range of objections. In particular, focus is laid on four objections that Michael Parker raises: that it is underdetermining, that it is insensitive to the complex nature of the (...) good, that it is self-defeating and that it is overly individualistic. Procreative Beneficence is a useful principle in reproductive decision-making. It is necessary to be more active in making selection decisions about what kind of child to have.Parker1 raises four objections to the principle of Procreative Beneficence . I will address these in turn. Procreative Beneficence is underdeterminingParker claims that Procreative Beneficence is underdetermining. By “underdetermining”, he means that the principle will not give clear and determinate answers as to which lives are better or best. Parker argues that “ranking possible lives as “better” or “worse” is “highly problematic”.Ranking lives is a very complex matter. Let us distinguish between: the value of a whole life and the value of an individual feature of a life .We should also distinguish between valuation ex ante and ex post . In Procreative Beneficence, I likened genetic testing to playing the wheel of fortune.2 Just because we have a weak chance of winning, does not mean we should not play the game. The only reason not to play a game that …. (shrink)

In late August 2002, a general practitioner in London, Dr Bhagat Singh Makkar, 62, was struck off the medical register after he was discovered to have bragged to an undercover journalist about being able to obtain a kidney from a live donor in exchange for a fee. He told the journalist, who posed as the son of a patient with renal failure: “No problem, I can fix that for you. Do you want it done here, do you want it done (...) in Germany or do you want it done in India?” The price he quoted included payment to the donor and “my administration costs”. Dr Makkar said he regretted giving “stupid answers” to the journalist. He had been “tired, confused, and upset after a long day dealing with emotional patients”.1Deliberation about ethics is often muddied by the personalities involved in a particular issue. Many people are uninspired by Richard Seed or Jack Kevorkian. This contaminates their view about the much broader and important issues such as cloning or euthanasia that Seed and Kevorkian, whom some people might describe as mavericks, have shoved their finger in.Discussion of the sale of organs is …. (shrink)

The precautionary principle aims to influence decision‐making in contexts where some activity poses uncertain but potentially grave threats. This perfectly describes the controversy surrounding germline gene editing. This article considers whether the precautionary principle should influence how we weigh the risks and benefits of human germline interventions, focusing especially on the possible threats to the health of future generations. We distinguish between several existing forms of the precautionary principle, assess their plausibility and consider their implications for the ethics of germline (...) modification. We also offer a novel form of the precautionary principle: the sufficientarian precautionary principle. Some plausible versions of the precautionary principle recommend placing somewhat greater weight on avoiding threats to future generations than on achieving short‐term benefits. However, no plausible versions of the precautionary principle entail that we should outright reject the use germline gene editing in human reproduction and some, such as the sufficientarian version, might endorse its use. (shrink)

This paper argues that doctors ought to make all things considered value judgments about what is best for their patients. It illustrates some of the shortcomings of the model of doctor as 'fact-provider'. The 'fact-provider' model fails to take account of the fact that practising medicine necessarily involves making value judgments; that medical practice is a moral practice and requires that doctors reflect on what ought to be done, and that patients can make choices which fail to express their autonomy (...) and which are based on mistaken judgments of value. If doctors are properly to respect patient autonomy and to function as moral agents, they must make evaluations of what their patients ought to do, all things considered. This paper argues for 'rational, non-interventional paternalism'. This is a practice in which doctors form conceptions of what is best for their patients and argue rationally with them. It differs from old-style paternalism in that it is not committed to doing what is best. (shrink)

Abortion and embryo destruction prevent a future of value, but that does not make them wrong.Abortion involves the killing of a fetus. One bad thing about killing a fetus is that the fetus is deprived of a future of value. Think of all the things which make your life good and worth living: understanding the world, seeing your children grow into independent, intelligent, and happy people, watching a sunset over the hills, enjoying good times with friends. By killing the fetus, (...) we are depriving it of a future life likely to contain these things. And more. The fetus would likely grow to be a person who would have contributed to the world in many ways—bringing joy to its parents, happiness, and friendship to many. That person would have laboured for society and perhaps even discovered a cure for cancer or developed the first bionic eye.The loss of these possible futures is bad. It makes the killing of a fetus wrong. This is Don Marquis's argument against abortion.1 It is one of the best arguments against abortion which does not rest on theological premises.Another way of putting this is to say that we have a good reason not to kill a fetus. A reason for acting is a fact or circumstance forming a sufficient justification for an action. Or in this case, not to perform an action. We have all sorts of reasons for action. Our reasons often conflict. I may have a good reason to visit my mother and a good reason to take my children to the park. What we have most reason to do is what it is right to do. It is what we should do. If we have most reason not to perform an act, …. (shrink)

We need to rethink our attitudes to the bodies of the dead in order to increase our willingness to donate organs and tissuesMy father died aged 87 on January 20, 1998. It was the day of his 42nd wedding anniversary. He been admitted to a major teaching hospital with jaundice of unknown origin. He died after a medical procedure and a delay in diagnosis and management of bleeding after the procedure. I believed it was important to understand why he had (...) died and what the underlying cause of his jaundice had been. I requested an autopsy.My father was not only the best father a person could have had, but my closest friend. The circumstances of his death were especially sad for me. I was on a plane while he was allowed to die of blood loss in intensive care over a period of hours, becoming progressively more delirious and experiencing the slow motion throes of death. I was told he had died while I was still in the air. My first thought was that I would never again see him or hear his deep chuckle. I would never again feel the gentle touch of his large hands. He would never see my daughter grow up as he had wanted to, playing, and laughing on the beach.I have witnessed many autopsies. As medical students, we had to attend autopsy each morning at 8.30 am as a part of pathology in fourth year medicine. Before this, we had two years of anatomy dissection, probing every crevice of the formalin fixed human body. I learnt an immense amount from these activities. But I also knew how gruesome the autopsy is. I knew that an autopsy would mean that my father would be dismembered. But I had no hesitation in requesting …. (shrink)

Failures in research ethics review examinedThe recent tragic death of Ellen Roche1 provides valuable lessons for research ethics review. The reasons for the wrongful administration of hexamethonium stem from researchers failing to act in certain ways, not from deliberate malicious or negligent actions.FIRST FAILING AND FIRST LESSON: PUBLICATION BIASThe first major failing was the failure of researchers who conducted the 1978 San Francisco study of hexamethonium to report similar adverse reactions.The tendency of researchers to fail to publish disappointing results2 or (...) results which are unattractive to them or their sponsors' interests has been well documented.3 It is called publication bias. An important part of publication bias is the failure to report all relevant or potentially relevant results. As this case illustrates, researchers must report or make available all research results, even negative results, and all potentially relevant outcomes of that research. If researchers believe an adverse event is unrelated to the study, they should explain why they believe this rather than omitting the event from their report. Elimination of publication bias is essential to scientific progress, to the protection of participants in research and in maintaining public faith in the integrity of scientists and doctors. Ethics committees and journals should make it clear that all adverse events—related or unrelated—to a project must be acknowledged, evaluated and further details made available to other researchers or the public if requested.SECOND FAILING: FAILURE TO CONDUCT A SYSTEMATIC REVIEWBut there is a more important failing. The most disturbing feature of this case was that literature documenting the pulmonary toxicity of hexamethonium was available before the trial began.In the study protocol submitted to the ethics committee, the researcher cited four reports involving 20 patients given inhaled hexamethonium without adverse event. However, Johns Hopkins investigators found a number of reports between 1953 and 1962, …. (shrink)

Our aim is to expand the regulative ideal governing consent. We argue that consent should not only be informed but also based on rational beliefs. We argue that holding true beliefs promotes autonomy. Information is important insofar as it helps a person to hold the relevant true beliefs. But in order to hold the relevant true beliefs, competent people must also think rationally. Insofar as information is important, rational deliberation is important. Just as physicians should aim to provide relevant information (...) regarding the medical procedures prior to patients consenting to have those procedures, they should also assist patients to think more rationally. We distinguish between rational choice/action and rational belief. While autonomous choice need not necessarily be rational, it should be based on rational belief. The implication for the doctrine of informed consent and the practice of medicine is that, if physicians are to respect patient autonomy and help patients to choose and act more rationally, not only must they provide information, but they should care more about the theoretical rationality of their patients. They should not abandon their patients to irrationality. They should help their patients to deliberate more effectively and to care more about thinking rationally. We illustrate these arguments in the context of Jehovah's Witnesses refusing life-saving blood transfusions. Insofar as Jehovah's Witnesses should be informed of the consequences of their actions, they should also deliberate rationally about these consequences. (shrink)

Death of a normal volunteer highlights problems with research review and protection of subjectsHealthy volunteer dies in asthma studyOn July 19, after investigating the death of a previously healthy volunteer, the United States Office for Human Research Protections suspended nearly all federally funded medical research involving human subjects at Johns Hopkins University. The death has been described as “particularly disturbing” because 24 year old Ellen Roche was a healthy volunteer who had nothing to gain by taking part in the study.1 (...) Her death has revived debate about the adequacy of oversight of medical research that followed the death of 18 year old Jesse Gelsinger who volunteered for a gene therapy experiment.Ellen Roche was a 24 year old technician from the Johns Hopkins Asthma and Allergy Centre who volunteered to take part in a study designed to provoke a mild asthma attack in order to help doctors discover the reflex that protects the lungs of healthy people against asthma attacks. After inhaling hexamethonium, a medication used for treating high blood pressure in the 1950s and 60s, Ms Roche became ill. She developed a cough and her condition worsened over the next week until she was put on a ventilator. With her lung tissue breaking down, blood pressure falling and her kidneys beginning to fail, nothing could be done to save her.2 She died on June 2, about a month after entering the study.The Office for Human Research Protections investigated the circumstances of Ms Roche's death and accused the Hopkins Institutional Review Board of failing to take proper precautions. It also evaluated the human subject protection system at Hopkins. The OHRP found that prior to approving the study, Hopkins researcher …. (shrink)

An Indian Court recently awarded 50,000 rupees damages to a couple who gave birth to their fourth daughter. The couple were mistakenly told they were carrying a male fetus. The doctor mistook a section of the umbilical cord for a penis. The husband said: “We are already struggling to raise three children. This was a big sacrifice for us to have a fourth child. We would have had an abortion if we had known it was a girl”. The cost of (...) damages amounted to the dowry they would have to pay at the time of their daughter's marriage.This is a fictional case. But the cases of Nicholas Perruche and Lionel1 are not fictional. According to reports, damages were paid to these children on the basis of what the media has described as a “right not to be born”. Is there a “right not to be born?” Was it right to compensate Nicholas Perruche for being born with congenital rubella and Lionel for being born with Down's syndrome?HARM TO THE CHILDWhat constitutes a right is a complex question. On one interpretation, rights protect interests. This implies that a right not to be born would exist if a child had an interest in not being born. Is it ever in a child's interests not to have been born? If it were, this might imply the child is better off dead than alive, as the Collective against Handiphobia claim. Is it better to be dead than have Down's syndrome?Some people do believe that Down's syndrome constitutes a life not worth living.2 But this view seems false. Children with Down's syndrome can and often do lead happy and worthwhile lives. After all, we do not suggest that other animals have a right not to be born or a life not worth …. (shrink)

We critically evaluate the ways in which competence in medical ethics has been evaluated. We report the initial stage in the development of a relevant, reliable and valid instrument to evaluate core critical thinking skills in medical ethics. This instrument can be used to evaluate the impact of medical ethics education programmes and to assess whether medical students have achieved a satisfactory level of performance of core skills and knowledge in medical ethics, within and across institutions.

The attitudes of Australian practitioners working in clinical genetics and obstetrical ultrasound were surveyed on whether termination of pregnancy (TOP) should be available for conditions ranging from mild to severe fetal abnormality and for non-medical reasons.These were compared for terminations at 13 weeks and 24 weeks. It was found that some practitioners would not facilitate TOP at 24 weeks even for lethal or major abnormalities, fewer practitioners support TOP at 24 weeks compared with 13 weeks for any condition, and the (...) difference in attitudes to TOP between 13 weeks and 24 weeks is most marked for pregnancies which are normal or involve a mild disorder. It is argued that a fetal abnormality criterion for late TOP is inconsistently applied, discriminatory and eugenic. Four possible moral justifications for current practice are examined, each of which would require significant changes to current practice. I argue in favour of a maternal interests criterion for any TOP. (shrink)

The most publicly justifiable application of human cloning, if there is one at all, is to provide self-compatible cells or tissues for medical use, especially transplantation. Some have argued that this raises no new ethical issues above those raised by any form of embryo experimentation. I argue that this research is less morally problematic than other embryo research. Indeed, it is not merely morally permissible but morally required that we employ cloning to produce embryos or fetuses for the sake of (...) providing cells, tissues or even organs for therapy, followed by abortion of the embryo or fetus. (shrink)

In a recent article entitled, Requests "for inappropriate" treatment based on religious beliefs, Orr and Genesen claim that futile treatment should be provided to patients who request it if their request is based on a religious belief. I claim that this implies that we should also accede to requests for harmful or cost-ineffective treatments based on religious beliefs. This special treatment of religious requests is an example of special pleading on the part of theists and morally objectionable discrimination against atheists. (...) It also provides an excellent illustration of how different the practices of religion and ethics are. (shrink)

An international team of ethicists refresh the debate about human enhancement by examining whether resistance to the use of technology to enhance our mental and physical capabilities can be supported by articulated philosophical reasoning, or explained away, e.g. in terms of psychological influences on moral reasoning.

Genomic sequencing technologies (GS) pose novel challenges not seen in older genetic technologies, making traditional standards for fully informed consent difficult or impossible to meet. This is due to factors including the complexity of the test and the broad range of results it may identify. Meaningful informed consent is even more challenging to secure in contexts involving significant time constraints and emotional distress, such as when rapid genomic testing (RGS) is performed in neonatal intensive care units. In this article, we (...) propose that informed consent matters not for its own sake, but because obtaining it furthers a range of morally important goals, such as promoting autonomy, well‐being, and trust in medicine. These goals form the basis of a new framework [PROmoting Morally Important Consent Ends (PROMICE)] for assessing the ethical appropriateness of various informed consent models. We illustrate this framework with two examples: (a) a tiered and layered consent model for obtaining consent for GS, and (b) consent for RGS in critically ill newborns. We conclude that appropriately—rather than fully—informed consent provides the correct standard for genomic medicine and research. (shrink)

One of the most commonly referenced ethical principles when it comes to the management of dying patients is the doctrine of double effect (DDE). The DDE affirms that it is acceptable to cause side effects (e.g. respiratory depression) as a consequence of symptom‐focused treatment. Much discussion of the ethics of end of life care focuses on the question of whether actions (or omissions) would hasten (or cause) death, and whether that is permissible. However, there is a separate question about the (...) permissibility of hastening or causing unconsciousness in dying patients. Some authors have argued that the DDE would not permit end of life care that directly aims to render the patient unconscious. The claim is that consciousness is an objective human good and therefore doctors should not intentionally (and permanently) suppress it. Three types of end of life care (EOLC) practices will be explored in this article. The first is symptom‐based management (e.g. analgesia); the second is proportional terminal sedation as a means of relieving suffering (also referred to as palliative sedation or continuous deep sedation); and finally, deliberate and rapid sedation to unconsciousness until death (a practice we call terminal anaesthesia in this paper). After examining the common arguments for the various types of symptom‐based management and sedation, we apply the DDE to the latter two types of EOLC practices. We argue that aiming at unconsciousness, contrary to some claims, can be morally good or at least morally neutral in some dying patients. (shrink)

Patients have a right to refuse medical treatment. But what should happen after a patient has refused recommended treatment? In many cases, patients receive alternative forms of treatment. These forms of care may be less cost-effective. Does respect for autonomy extend to providing these alternatives? How for does justice constrain autonomy? I begin by providing three arguments that such alternatives should not be offered to those who refuse treatment. I argue that the best argument which refusers can appeal to is (...) based on the egalitarian principle of equality of outcome. However, this principle does not ultimately support a right to less cost-effective alternatives. I focus on Jehovah's Witnesses refusing blood and requesting alternative treatments. However, the point applies to many patients who refuse cost-effective medical care. (shrink)

BackgroundResuscitation and treatment of critically ill newborn infants is associated with relatively high mortality, morbidity and cost. Guidelines relating to resuscitation have traditionally focused on the best interests of infants. There are, however, limited resources available in the neonatal intensive care unit, meaning that difficult decisions sometimes need to be made. This study explores the intuitions of lay people regarding resource allocation decisions in the NICU.MethodsThe study design was a cross-sectional quantitative survey, consisting of 20 hypothetical rationing scenarios. There were (...) 119 respondents who entered the questionnaire, and 109 who completed it. The respondents were adult US and Indian participants of the online crowdsourcing platform Mechanical Turk. Respondents were asked to decide which of two infants to treat in a situation of scarce resources. Demographic characteristics, personality traits and political views were recorded. Respondents were also asked to respond to a widely cited thought experiment involving rationing.ResultsThe majority of respondents, in all except one scenario, chose the utilitarian option of directing treatment to the infant with the higher chance of survival, higher life expectancy, less severe disability, and less expensive treatment. As discrepancy between outcomes decreased, however, there was a statistically significant increase in egalitarian responses and decrease in utilitarian responses in scenarios involving chance of survival, life expectancy, and cost of treatment. In the classic ‘lifeboat’ scenario, all but two respondents were utilitarian.ConclusionsThis survey suggests that in situations of scarcity and equal clinical need, non-health professionals support rationing of life-saving treatment based on probability of survival, duration of survival, cost of treatment or quality of life. However, where the difference in prognosis or cost is very small, non-health professionals preferred to give infants an equal chance of receiving treatment. (shrink)

Important lessons must be learned from the Bristol inquiryI was disturbed when I first read the following in an October 1998 issue of the Medical Journal of Australia."In June 1998, the Professional Conduct Committee of the General Medical Council of the United Kingdom concluded the longest running case it has considered [this] century. Three medical practitioners were accused of serious professional misconduct relating to 29 deaths in 53 paediatric cardiac operations undertaken at the Bristol Royal Infirmary between 1988 and 1995. (...) All three denied the charges but, after 65 days of evidence over eight months , all three were found guilty." "The doctors concerned are Mr James Wisheart, a paediatric and adult cardiac surgeon and the former Medical Director of the United Bristol Healthcare Trust; Mr Janardan Dhasmana, paediatric and adult cardiac surgeon; and Dr John Roylance, a former radiologist, and Chief Executive of the Trust." "The central allegations were that the Chief Executive and the Medical Director allowed to be carried out, and the two paediatric cardiac surgeons carried out, operations on children knowing that the mortality rates for these operations, in the hands of these surgeons, were high. Furthermore, the surgeons were accused of not communicating to the parents the correct risk of death for these operations in their hands.1"Mr Wisheart and Dr Roylance were subsequently struck off the medical register. Mr Dhasmana was disqualified from practising paediatric cardiac surgery for three years. The doctors required police protection as they left the General Medical Council hearing as furious parents shouted “murderer” and “bastard”.2Why did this occur?Dr Stephen Bolsin has presented a …. (shrink)

Promoting respect for the four principles remains of great practical importance in ordinary medicineThis is a special edition of the journal to celebrate the contribution of Raanan Gillon to the field of medical ethics. The papers in this issue are from a festspiel in honour of Raanan held on the 17th of October 2003. The theme of the festspiel was method in medical ethics. Colleagues of Raanan were asked to outline their own approach to medical ethics, and how this differed (...) from the four principles approach advocated by Raanan, as applied to four hypothetical cases which are also reproduced in this issue of the journal.1It is a great privilege to be able to publish this series of papers, and Raanan’s reply, in the journal for several reasons.The first and most important of these is that they are a tribute to the enormous contribution Raanan has made to the field of medical ethics. Raanan has been a pioneer in medical ethics in the United Kingdom and beyond. He edited the Journal of Medical Ethics for over 20 years, retiring in 2001. He has been instrumental in establishing medical ethics as a discipline, particularly within medical schools, in the United Kingdom.2 His book Philosophical Medical Ethics is one of the classics.3While most people associate Raanan with his advocacy of the four principles, it is important to remember his approach is not restricted solely to application of the four principles. He is also one of the sharpest, wittiest, and most original thinkers in medical ethics. In a recent editorial,4—for example, Raanan disagreed with a judicial decision to impose separation of identical twins which caused the death of one twin. He described it as “hubris”. He argued that the …. (shrink)

Background: There currently exist no data on the factors that contribute to determining why medical ethicists choose to review for and submit articles to medical ethics journals.Objective: To establish which factors contribute to medical ethicists reviewing articles for or submitting them to medical ethics journals by consulting those who are active in this capacity.Methods: Medical ethicists were surveyed to determine their incentives and disincentives for reviewing articles for or submitting them to medical ethics journals. Survey participants were chosen based on (...) a review of the academic and research record of medical ethicists working in North America in higher education institutions.Results: The most frequent incentives to reviewing journal articles were: an opportunity to contribute to the field/profession, the good reputation of the journal, the high impact factor of the journal, and to keep up to date on current research. The most frequent disincentives to reviewing journal articles were: time constraints due to academic commitments, the poor reputation of the journal, and time constraints caused by other editorial commitments . The most important incentives to submitting journal articles were: the good reputation of the journal, the quality of scholarship previously published in the journal, the impact factor of the journal, and a fast turn-around from acceptance to publication. The most important disincentives to submitting journal articles were: the poor reputation of the journal, the poor quality of work previously published in the journal, and a slow turn-around from acceptance to publication.Conclusion: A series of factors that medical ethics journals should strive to employ to encourage reviewing and submission of articles are recommended. (shrink)

ethics mostly focuses on what we do. One form of action is a speech act. What we say can have profound effects. We can and should choose our words and how we speak wisely. When someone close to us suffers an injury or serious illness, a duty of beneficence requires that we support that person through beneficial words or actions. Though our intentions are most often benign, by what we say we often make the unfortunate person feel worse. Beginning with (...) two personal accounts, this article explains what can go wrong in the compassionate speech of wellwishers, and uncovers some of the reasons why people say things that are hurtful or harmful. Despite a large body of clinical evidence, there is no perfect strategy for comforting a friend or relative who is ill, and sometimes even the best thing to say can still be perceived as insensitive and hurtful. In some cases, we may have good reason to knowingly say a hurtful or insensitive thing. Saying these ‘wrong’ things can sometimes be the best way to help a person in the long term. To complicate matters, there can be moral reasons for overriding what is good for the patient. What kind of admonishments should we make to a badly behaved patient? What is the value of authenticity in our communication with the people we love? These questions demand an ethical defence of those speech acts which are painful to hear but which need to be said, and of those which go wrong despite the best efforts of the wellwisher. We offer an ethical account, identifying permissible and impermissible justifications for the things we say to a person with a serious injury or illness. (shrink)

Controlled Human Infection Model (CHIM) research involves the infection of otherwise healthy participants with disease often for the sake of vaccine development. The COVID-19 pandemic has emphasised the urgency of enhancing CHIM research capability and the importance of having clear ethical guidance for their conduct. The payment of CHIM participants is a controversial issue involving stakeholders across ethics, medicine and policymaking with allegations circulating suggesting exploitation, coercion and other violations of ethical principles. There are multiple approaches to payment: reimbursement, wage (...) payment and unlimited payment. We introduce a new Payment for Risk Model, which involves paying for time, pain and inconvenience and for risk associated with participation. We give philosophical arguments based on utility, fairness and avoidance of exploitation to support this. We also examine a cross-section of the UK public and CHIM experts. We found that CHIM participants are currently paid variable amounts. A representative sample of the UK public believes CHIM participants should be paid approximately triple the UK minimum wage and should be paid for the risk they endure throughout participation. CHIM experts believe CHIM participants should be paid more than double the UK minimum wage but are divided on the payment for risk. The Payment for Risk Model allows risk and pain to be accounted for in payment and could be used to determine ethically justifiable payment for CHIM participants.Although many research guidelines warn against paying large amounts or paying for risk, our empirical findings provide empirical support to the growing number of ethical arguments challenging this status quo. We close by suggesting two ways (value of statistical life or consistency with risk in other employment) by which payment for risk could be calculated. (shrink)

Synthetic biologists aim to generate biological organisms according to rational design principles. Their work may have many beneficial applications, but it also raises potentially serious ethical concerns. In this article, we consider what attention the discipline demands from bioethicists. We argue that the most important issue for ethicists to examine is the risk that knowledge from synthetic biology will be misused, for example, in biological terrorism or warfare. To adequately address this concern, bioethics will need to broaden its scope, contemplating (...) not just the means by which scientific knowledge is produced, but also what kinds of knowledge should be sought and disseminated. (shrink)

The papers of Burley and Harris, and Draper and Chadwick, in this issue, raise a problem: what should doctors do when patients request an option which is not the best available? This commentary argues that doctors have a duty to offer that option which will result in the individual affected by that choice enjoying the highest level of wellbeing. Doctors can deviate from this duty and submaximise--bring about an outcome that is less than the best--only if there are good reasons (...) to do so. The desire to have a child which is genetically related provides little, if any, reason to submaximise. The implication for cloning, preimplantation diagnosis and embryo transfer is that doctors should only produce a clone or transfer embryos expected to enjoy a level of wellbeing which is less than that enjoyed by other children the couple could have, if there is a good reason to employ that technology. This paper sketches what might constitute a good reason to submaximise. (shrink)

In this review of the Korean cloning scandal involving Woo-Suk Hwang, the nature of the disaster is documented and reasons why it occurred are suggested. The general problems it raises for scientific research are highlighted and six possible ways of improving practice are offered in the light of this case: better education of science students; independent monitoring and validation; guidelines for tissue donation for research; fostering of debate about ethically contentious research in science journals; development of an international code of (...) ethical research practice; fostering of public involvement in ethical review and debate through the web. (shrink)

Recent studies using functional magnetic resonance imaging of patients in a vegetative state have raised the possibility that such patients retain some degree of consciousness. In this paper, the ethical implications of such findings are outlined, in particular in relation to decisions about withdrawing life-sustaining treatment. It is sometimes assumed that if there is evidence of consciousness, treatment should not be withdrawn. But, paradoxically, the discovery of consciousness in very severely brain-damaged patients may provide more reason to let them die. (...) Although functional neuroimaging is likely to play an increasing role in the assessment of patients in a vegetative state, caution is needed in the interpretation of neuroimaging findings. (shrink)

The non-identity problem arises when our actions in the present could change which people will exist in the future, for better or worse. Is it morally better to improve the lives of specific future people, as compared to changing which people exist for the better? Affecting the timing of fetuses being conceived is one case where present actions change the identity of future people. This is relevant to questions of public health policy, as exemplified in some responses to the Zika (...) epidemic. There is philosophical disagreement about the relevance of non-identity: some hold that non-identity is not relevant, while others think that the only morally relevant actions are those that affect specific people. Given this disagreement, we investigated the intuitions about the moral relevance of non-identity within an educated sample of the public, because there was previously little empirical data on the public’s views on the non-identity problem. We performed an online survey with a sample of the educated general public. The survey assessed participants’ preferences between person-affecting and impersonal interventions for Zika, and their views on other non-identity thought experiments, once the non-identity problem had been explained. It aimed to directly measure the importance of non-identity in participants’ moral decision-making. We collected 763 valid responses from the survey. Half of the participants (50%) had a graduate degree, 47% had studied philosophy at a university level, and 20% had read about the non-identity problem before. Most participants favoured person-affecting interventions for Zika over impersonal ones, but the majority claimed that non-identity did not influence their decision (66% of those preferring person-affecting interventions, 95% of those preferring impersonal ones). In one non-identity thought experiment participants were divided, but in another they primarily answered that impersonally reducing the quality of life of future people would be wrong, harmful and blameworthy, even though no specific individuals would be worse off. Non-identity appeared to play a minor role in participants’ moral decision-making. Moreover, participants seem to either misunderstand the non-identity problem, or hold non-counterfactual views of harm that do not define harm as making someone worse off than they would have been otherwise. (shrink)

of (from Oxford Uehiro Centre for Practical Ethics).

Clinician gate-keeping is the process whereby healthcare providers prevent access to eligible patients for research recruitment. This paper contends that clinician gate-keeping violates three principles that underpin international ethical guidelines: respect for persons or autonomy; beneficence or a favourable balance of risks and potential benefits; and justice or a fair distribution of the benefits and burdens of research. In order to stimulate further research and debate, three possible strategies are also presented to eliminate gate-keeping: partnership with professional researchers; collaborative research (...) design and clinician education. (shrink)

This paper describes the concept of a do-gooder: a person who does unwanted good. It illustrates why doing-good is a problem and argues that patients should not be compelled to do what is best. It shows the ways in which doctors covertly do-good and offers a critique of these. The discussion focuses on the example of the treatment of patients who attempt suicide.