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There is ongoing debate regarding whether and under which circumstances secondary findings (SF) should be offered in the pediatric context. Although studies have examined patient perspectives on receiving SF, little research has been conducted examining the experiences of clinicians offering SF to parents of newborns receiving genomic sequencing for a recently diagnosed medical condition.To address this, we conducted qualitative interviews exploring the views and experiences of 12 clinicians who offered SF to parents of infants who had diagnostic exome sequencing (ES) to identify the cause of their hearing loss. Interviews explored clinicians' accounts of parents' choices and decision-making about receiving SF, their views on whether and when to offer SF, their experiences returning SF, and any ethical challenges they encountered. Interviews were audio-recorded, transcribed and analyzed using inductive content analysis.Clinicians reported parents who declined all SF often felt finding out about future conditions unrelated to their child's hearing loss may be unhelpful, or even harmful, or were overwhelmed by their child's diagnosis. Clinicians also reported that some parents chose SF because they felt obliged to, even if they did not want to receive them. They explained that while some parents experienced decision-making regarding SF as positive, for others, this process was challenging or distressing. While clinicians generally agreed SF should be offered, mainly to promote parental choice, most felt SF should be offered after disclosing diagnostic results, primarily to avoid overwhelming parents. Clinicians encountered several ethical challenges, including balancing parental autonomy with non-maleficence, wanting to report or not report certain SF, and questioning whether parents can make an autonomous choice regarding SF.Our findings, which are novel as they relate to parents of young infants with a recent diagnosis of hearing loss, add new insights into clinicians' and parents' decision-making regarding SF in pediatrics.

Despite advances in palliative care, some patients still suffer significantly at the end of life. Terminal Sedation (TS) refers to the use of sedatives in dying patients until the point of death. The following limits are commonly applied: (1) symptoms should be refractory, (2) sedatives should be administered proportionally to symptoms and (3) the patient should be imminently dying. The term ‘Expanded TS’ (ETS) can be used to describe the use of sedation at the end of life outside one or more of these limits.In this paper, we explore and defend ETS, focusing on jurisdictions where assisted dying is lawful. We argue that ETS is morally permissible: (1) in cases of non-refractory suffering where earlier treatments are likely to fail, (2) where gradual sedation is likely to be ineffective or where unconsciousness is a clinically desirable outcome, (3) where the patient meets all criteria for assisted dying or (4) where the patient has greater than 2 weeks to live, is suffering intolerably, and sedation is considered to be the next best treatment option for their suffering.While remaining two distinct practices, there is scope for some convergence between the criteria for assisted dying and the criteria for ETS. Dying patients who are currently ineligible for TS, or even assisted dying, should not be left to suffer. ETS provides one means to bridge this gap.

Liberty-restricting measures are basic measures in combatting any pandemic. But whose liberty should be restricted? One standard response in public health ethics is to appeal to the “least restrictive alternative” necessary to achieve a public health goal. But in practice greater restriction of liberty can lead to greater control of the pandemic and save more lives, though with increasing burdens to others. Liberty restriction is thus a question of the distribution of benefits and burdens in a population, a question of distributive justice. This chapter argues that in some pandemics, such as COVID-19, it may be a more proportionate restriction of liberty to restrict the liberty of certain groups rather than the population as a whole. Two arguments were given in the COVID-19 pandemic for liberty restriction: protection of the vulnerable, and protection of the health service. These are, however, more fundamentally issues about distributive justice. The chapter explores how several approaches to distributive justice can support the differential restriction of liberty. In addition, it argues that the commonly accepted justification for liberty restrictions (that liberty restrictions may be justified to prevent direct harm to others) can be overly simplistic, as illustrated by the COVID-19 pandemic; that where risk groups are more likely to utilize limited health resources, they pose an indirect threat to others that warrants coercion; and that there should be a side-constraint on justice of non-maleficence. The chapter addresses the issue of whether selective restriction of liberty constitutes unjust discrimination and proposes an algorithm for making decisions.

We provide ethical criteria to establish when vaccine mandates for healthcare workers are ethically justifiable. The relevant criteria are the utility of the vaccine for healthcare workers, the utility for patients (both in terms of prevention of transmission of infection and reduction in staff shortage), and the existence of less restrictive alternatives that can achieve comparable benefits. Healthcare workers have professional obligations to promote the interests of patients that entail exposure to greater risks or infringement of autonomy than ordinary members of the public. Thus, we argue that when vaccine mandates are justified on the basis of these criteria, they are not unfairly discriminatory and the level of coercion they involve is ethically acceptable—and indeed comparable to that already accepted in healthcare employment contracts. Such mandates might be justified even when general population mandates are not. Our conclusion is that, given current evidence, those ethical criteria justify mandates for influenza vaccination, but not COVID-19 vaccination, for healthcare workers. We extend our arguments to other vaccines.

For 3 decades, couples at increased risk for a genetic disorder have been offered preimplantation genetic testing (PGT). Simultaneously, PGT for aneuploidy (PGT-A) to improve in vitro fertilization (IVF) outcomes was introduced, but evidence of value-added remains inconsistent. Recently, lower genetic testing costs and shorter turnaround time have reinvigorated PGT-A. Additionally, a shift from blastomere (day 3) to blastocyst (day 5) transfer and embryo freezing advances support PGT without the time constraints of immediate transfer. PGT-A transformed from a time-constrained analysis of 1-2 cells to an "add on" study for all IVF. But should it be offered to all IVF patients? And if not, under what conditions? Pre-debate polling found 64% opposed to PGT for all IVF cycles with concerns voiced about cost, informed consent, and a "slippery slope". Leaving aside the inconsistent evidence of IVF improvement whether measured as miscarriage or livebirths with PGT-A, the debaters grappled with patient and provider desires versus the ethical concerns for the unborn child. However, the audience was not swayed; two thirds remained opposed to PGT for all IVF cycles.

What is already known? The Texas Heartbeat Act, which has been in effect since September 2021, prohibits abortions once a ‘fetal heartbeat’ is detected, except in emergency situations. The law significantly limits access to abortion services in Texas, by essentially prohibiting abortions post 6 weeks' gestation. The law has been subjected to several legal challenges, none of which have been successful to date. What does this article add? This article provides an overview of some of the ethical concerns the law raises and identifies some of the problems the law creates for women, the health profession and society. The article ultimately argues that the law ought to be quashed.

When is life-sustaining treatment not in the best interests of a minimally conscious child? This is an extremely difficult question that incites seemingly intractable debate. And yet, it is the question courts in England and Wales have set out to answer in disputes about appropriate medical treatment for children.

A growing number of technologies are currently being developed to improve and distribute thinking and decision-making. Rapid progress in brain-to-brain interfacing and swarming technologies promises to transform how we think about collective and collaborative cognitive tasks across domains, ranging from research to entertainment, and from therapeutics to military applications. As these tools continue to improve, we are prompted to monitor how they may affect our society on a broader level, but also how they may reshape our fundamental understanding of agency, responsibility, and other key concepts of our moral landscape.In this paper we take a closer look at this class of technologies – Technologies for Collective Minds – to see not only how their implementation may react with commonly held moral values, but also how they challenge our underlying concepts of what constitutes collective or individual agency. We argue that prominent contemporary frameworks for understanding collective agency and responsibility are insufficient in terms of accurately describing the relationships enabled by Technologies for Collective Minds, and that they therefore risk obstructing ethical analysis of the implementation of these technologies in society. We propose a more multidimensional approach to better understand this set of technologies, and to facilitate future research on the ethics of Technologies for Collective Minds.

The scope of noninvasive prenatal testing (NIPT) could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic contribution, including "non-medical" traits. Here we discuss the potential use of NIPT for these traits. We outline a scenario which highlights possible inconsistencies with ethical decision-making. We then discuss the case against permitting these uses. The objections include practical problems; increasing inequities; increasing the burden of choice; negative impacts on the child, family, and society; and issues with implementation. We then outline the case for permitting the use of NIPT for these traits. These include arguments for reproductive liberty and autonomy; questioning the labeling of traits as "non-medical"; and the principle of procreative beneficence. This summary of the case for and against can serve as a basis for the development of a consistent and coherent ethical framework. Refereed/Peer-reviewed

Over the past few years, artificial intelligence (AI) solutions have been increasingly explored and developed for health-care settings. This trend is only expected to accelerate. ‘AI’ in this chapter refers primarily to deep learning models and the chapter considers the main ethical concerns that arise on the basis of (a) bias, discrimination, and fairness; (b) patient-centred medicine; (c) AI and value-based decision-making; (d) responsibility, accountability, and explanation; and (e) the broader long-term societal effects of AI in health care. The various questions posed under these themes are considered, the main arguments are assembled, and directions for future research are considered.

The use of placebo comparisons for randomised trials assessing the efficacy of surgical interventions is increasingly being considered. However, a placebo control is a complex type of comparison group in the surgical setting and, although powerful, presents many challenges.To provide a summary of knowledge on placebo controls in surgical trials and to summarise any recommendations for designers, evaluators and funders of placebo-controlled surgical trials.To carry out a state-of-the-art workshop and produce a corresponding report involving key stakeholders throughout.A workshop to discuss and summarise the existing knowledge and to develop the new guidelines.To assess what a placebo control entails and to assess the understanding of this tool in the context of surgery is considered, along with when placebo controls in surgery are acceptable (and when they are desirable). We have considered ethics arguments and regulatory requirements, how a placebo control should be designed, how to identify and mitigate risk for participants in these trials, and how such trials should be carried out and interpreted. The use of placebo controls is justified in randomised controlled trials of surgical interventions provided that there is a strong scientific and ethics rationale. Surgical placebos might be most appropriate when there is poor evidence for the efficacy of the procedure and a justified concern that results of a trial would be associated with a high risk of bias, particularly because of the placebo effect.The use of placebo controls is justified in randomised controlled trials of surgical interventions provided that there is a strong scientific and ethics rationale. Feasibility work is recommended to optimise the design and implementation of randomised controlled trials. An outline for best practice was produced in the form of the Applying Surgical Placebo in Randomised Evaluations (ASPIRE) guidelines for those considering the use of a placebo control in a surgical randomised controlled trial.Although the workshop participants involved international members, the majority of participants were from the UK. Therefore, although every attempt was made to make the recommendations applicable to all health systems, the guidelines may, unconsciously, be particularly applicable to clinical practice in the UK NHS.Future work should evaluate the use of the ASPIRE guidelines in making decisions about the use of a placebo-controlled surgical trial. In addition, further work is required on the appropriate nomenclature to adopt in this space.Funded by the Medical Research Council UK and the National Institute for Health Research as part of the Medical Research Council-National Institute for Health Research Methodology Research programme.One of the best ways to prove that a new medicine really works is to use a scientific test called a ‘placebo-controlled trial’. In this type of test, half of the participants are given a new pill and the other half are given a ‘placebo’, which is a dummy pill (usually a sugar pill) that is made to taste and look the same as the active pill, but has no active ingredients. The results are then compared. Just like medicines, new surgical procedures need to be tested to show that they are safe and benefit patients. Ideally, they would also be tested using the ‘placebo-controlled trial’ approach, but asking patients to have ‘dummy’ surgery is not the same as asking people to take a dummy pill. Placebo surgery raises lots of ethics questions and is controversial. As it is controversial, guidelines are needed to recommend when placebo surgery studies can be used (if at all) and what special considerations need to be taken into account. Our research team was commissioned to develop these guidelines.We summarised, to the best of our knowledge, all previous research that had used placebo surgery and reviewed all the ethics literature on this topic. We also looked at the latest scientific understanding of how placebos work. We then held a workshop to discuss and summarise the existing knowledge and to develop the new guidelines. This involved an international team of patients, surgeons, researchers, ethicists, psychologists, physiologists and funders. We published the guidelines [i.e. the ASPIRE (Applying Surgical Placebo in Randomised Evaluations) guidelines] in an influential medical journal and also wrote several other publications. This report provides a slightly more detailed version of our findings and recommendations.The guidelines will help researchers and doctors know when, and how, to best design placebo surgery studies in the future.

Although the COVID-19 pandemic is a serious public health and economic emergency, and although effective vaccines are the best weapon we have against it, there are groups and individuals who oppose certain kinds of vaccines because of personal moral or religious reasons. The most widely discussed case has been that of certain religious groups that oppose research on COVID-19 vaccines that use cell lines linked to abortions and that object to receiving those vaccine because of their moral opposition to abortion. However, moral opposition to COVID-19 vaccine research can be based on other considerations, both secular and religious. We argue that religious or personal moral objections to vaccine research are unethical and irresponsible, and in an important sense often irrational. They are unethical because of the risk of causing serious harm to other people for no valid reason; irresponsible because they run counter to individual and collective responsibilities to contribute to important public health goals; and in the case of certain kinds of religious opposition, they might be irrational because they are internally inconsistent. All in all, our argument translates into the rather uncontroversial claim that we should prioritize people’s lives over religious freedom in vaccine research and vaccination roll out.

Diagnostic genomic sequencing generates unprecedented amounts of data. In addition to its primary use, this data could be used for a wide range of secondary purposes, including research and informing future healthcare for the data donor. These opportunities may require data to be shared with third parties. Although effective data sharing relies on public support, there are barriers which may prevent people from choosing to donate their genomic data and surprisingly few studies explore these barriers in depth. To address this need, this study aimed to qualitatively explore the Australian public's views and preferences for storing and sharing genomic data. Online focus groups were recorded, transcribed, and analysed using inductive content analysis. A total of 7 focus groups were conducted with 39 members of the Australian public ranging from 18 to 67 years of age. Participants were mostly supportive of genomic data being stored and shared for secondary purposes, recognising the potential benefits for individual health and wider medical research. However, some concerns were identified. Participants felt genomic data was particularly sensitive information, and raised the potential for discrimination, stigma, and other malicious uses of such data. Concerns for privacy and security of the data were also prevalent. Trustworthiness of data users was important when considering who genomic data should be shared with. Although participants were supportive of data being freely available to health professionals and researchers, they were opposed to insurance companies and employers accessing the data. There was greater controversy around sharing data with law enforcement and pharmaceutical companies. Participants recognised both benefits and harms to sharing with law enforcement. They were also cognizant of the dual purpose of pharmaceutical companies as both research and profit-driven organisations. Finally, participants expressed varying perspectives about sharing genomic data with family members, yet most agreed that explicit consent from the data donor should be required to share their information with relatives. This study highlighted several of the Australian public's perceived barriers and motivators for the storage and sharing of genomic data. Participants recognised both the benefits of collecting, storing and sharing such data widely but also the potential for harm from data misuse. While public acceptance of such endeavours is required to maximise the volume of data made available, the concerns around data access and security need to be addressed before this can occur. These findings also highlight the nuance and ethical complexity of decisions about who we should allow to access donated genomic data. These perspectives will be essential in helping to shape the way large-scale genomic data storage and sharing is developed and implemented in Australia, and internationally.

This paper explores the ethical challenges in deciding whether to vaccinate individuals lacking the decision-making capacity needed to provide informed consent during a public health emergency like COVID-19. The best interests standard ordinarily governs such decisions, which under the law in jurisdictions like England, Wales and Singapore takes into account the individual’s past wishes and present preferences. However, in a public health emergency, the interests of third parties become more salient: those whom the unvaccinated individual might expose to infection have an interest in the individual’s being vaccinated. While current mental capacity law has not been interpreted to take such public health considerations into account, we argue that such considerations are nevertheless ethically relevant, and can legitimately be weighed up alongside other considerations such as the preferences of the individual and impacts on their health. This is most relevant for individuals lacking decision-making capacity who have previously declined or presently resist vaccination. The public health impact of vaccination may in some instances be enough to outweigh preferences of the individual and justify providing vaccination against their past or present wishes.

Lockdowns and quarantines have been implemented widely in response to the COVID-19 pandemic. This has been accompanied by a rise in interest in the ethics of ‘passport’ systems that allow low-risk individuals greater freedoms during lockdowns and exemptions to quarantines. Immunity and vaccination passports have been suggested to facilitate the greater movement of those with acquired immunity and who have been vaccinated. Another group of individuals who pose a low risk to others during pandemics are those with genetically mediated resistances to pathogens. In this paper, we introduce the concept of genomic passports, which so far have not been explored in the bioethics literature. Using COVID-19 as an illustrative example, we explore the ethical issues raised by genomic passports and highlight differences and similarities to immunity passports. We conclude that, although there remain significant practical and ethical challenges to the implementation of genomic passports, there will be ways to ethically use them in the future.

In response to the COVID-19 pandemic philosophers and governments have proposed scarce resource allocation guidelines. Their purpose is to advise healthcare professionals on how to ethically allocate scarce medical resources. One challenging feature of the pandemic has been the large numbers of patients needing mechanical ventilatory support. Guidelines have paradigmatically focused on the question of what doctors should do if they have fewer ventilators than patients who need respiratory support: which patient should get the ventilator? There is, however, an important higher level allocation problem. Namely, how are we to ethically distribute newly obtained ventilators across hospitals: which hospital should get the ventilator(s)? In this paper, we identify a set of principles for allocating newly obtained ventilators across hospitals. We focus particularly on low and middle income countries, who frequently have limited pre-existing intensive care capacity, and have needed to source additional ventilators. We first provide some background. Second, we argue that the main population healthcare aim during the COVID-19 pandemic should be to save the most lives. Next, we assess a series of potential heuristics or principles that could be used to guide allocation: allocation to the most densely populated cities, random allocation, allocation based on the ratio of patients to ICU personnel, prioritisation in terms of intrahospital mortality, prioritisation of younger populations, and prioritisation in terms of population mortality. We conclude by providing a plausible ranking of the principles, while noting a number of epistemological challenges, in terms of how they best further the aim of increasing the probability of saving the most lives.

Rapid genomic testing (rGT) enables genomic information to be available in a matter of hours, allowing it to be used in time-critical settings, such as intensive care units. Although rGT has been shown to improve diagnostic rates in a cost-effective manner, it raises ethical questions around a range of different areas, including obtaining consent and clinical decision-making. While some research has examined the perspectives of parents and genetics health professionals, the attitudes of intensive care clinicians remain under-explored. To address this gap, we administered an online survey to English-speaking neonatal/paediatric intensivists in Europe, Australasia and North America. We posed two ethical scenarios: one relating to obtaining consent from the parents and the second assessing decision-making regarding the provision of life-sustaining treatments. Descriptive statistics were used to analyse the data. We received 40 responses from 12 countries. About 50–75% of intensivists felt that explicit parental consent was necessary for rGT. About 68–95% felt that a diagnosis from rGT should affect the provision of life-sustaining care. Results were mediated by intensivists’ level of experience. Our findings show divergent attitudes toward ethical issues generated by rGT among intensivists and suggest the need for guidance regarding ethical decision-making for rGT.

In this response paper, we respond to the criticisms that Michal Pruski raised against our article “Beyond Money: Conscientious Objection in Medicine as a Conflict of Interests.” We defend our original position against conscientious objection in healthcare by suggesting that the analogies Pruski uses to criticize our paper miss the relevant point and that some of the analogies he uses and the implications he draws are misplaced.

Neuroimaging research regularly yields “incidental findings”: observations of potential clinical significance in healthy volunteers or patients, but which are unrelated to the purpose or variables of the study.

Prenatal screening for sex chromosome aneuploidies (SCAs) is increasingly available through expanded non-invasive prenatal testing (NIPT). NIPT for SCAs raises complex ethical issues for clinical providers, prospective parents and future children. This paper discusses the ethical issues that arise around NIPT for SCAs and current guidelines and protocols for management. The first section outlines current practice and the limitations of NIPT for SCAs. It then outlines key guidelines before discussing the ethical issues raised by this use of NIPT. We conclude that while screening for SCAs should be made available for people seeking to use NIPT, its implementation requires careful consideration of what, when and how information is provided to users.

We would like to thank each of the commentators on our feature article for their thoughtful engagement with our arguments. All the commentaries raise important questions about our proposed justification for natural immunity exemptions to COVID-19 vaccine mandates. Thankfully, for some of the points raised, we can simply signal our agreement. For instance, Reiss is correct to highlight that our article did not address the important US-centric considerations she helpfully raises and fruitfully discusses. We also agree with Williams about the need to provide a clear rationale for mandates, and to obtain different kinds of data in support of possible policies.Unfortunately, we lack the space to engage with every one of the more critical comments raised in this rich set of commentaries; as such, in this response, we shall focus on a discussion of hybrid immunity, which underlies a number of different arguments evident in the commentaries, before concluding with some reflections responding to Lipsitch’s concern about the appropriate standard of proof in this context.

Psychiatric involvement in patient morality is controversial. If psychiatrists are tasked with shaping patient morality, the coercive potential of psychiatry is increased, treatment may be unfairly administered on the basis of patients’ moral beliefs rather than medical need, moral disputes could damage the therapeutic relationship and, in any case, we are often uncertain or conflicted about what is morally right. Yet, there is also a strong case for the view that psychiatry often works through improving patient morality and, therefore, should aim to do so. Our goal is to offer a practical and ethical path through this conflict. We argue that the default psychiatric approach to patient morality should be procedural, whereby patients are helped to express their own moral beliefs. Such a procedural approach avoids the brunt of objections to psychiatric involvement in patient morality. However, in a small subset of cases where patients’ moral beliefs are sufficiently distorted or underdeveloped, we claim that psychiatrists should move to a substantive approach and shape thecontentof those beliefs when they are relevant to psychiatric outcomes. The substantive approach is prone to the above objections but we argue it is nevertheless justified in this subset of cases.

Moral bioenhancement is a biological modification or intervention which makes moral behavior more likely. There are a number of ways this could potentially be achieved, including pharmaceuticals, non-invasive brain stimulation, or genetic engineering. Moral bioenhancement can be distinguished from other kinds of enhancement because it primarily benefits others, rather than just the individual who has been enhanced. With the challenges that will face future generations, such as climate change and the rise of artificial intelligence, it is even more important to address the possibilities of moral bioenhancement. In this chapter, the authors examine rationales for moral bioenhancement, the possibilities of these technologies, and some common critiques and concerns. The authors defend the view that moral bioenhancement may be a useful tool—one tool among many—to help future generations respond to these aforementioned challenges. The authors suggest that an application of the non-identity problem to genetic selection may help resolve some of the concerns surrounding moral bioenhancement.

Numerous chronic diseases have a substantial hereditary component. Recent advances in human genetics have allowed the extent of this to be quantified via genome-wide association studies, producing polygenic risk scores (PRS), which can then be applied to individuals to estimate their risk of developing a disease in question. This technology has recently been applied to embryo selection in the setting of IVF and preimplantation genetic testing, with limited data to support its utility. Furthermore, there are concerns that the inherent limitations of PRS makes it ill-suited for use as a screening test in this setting. There are also serious ethical and moral questions associated with this technology that are yet to be addressed. We conclude that further research and ethical reflection are required before embryo selection based on PRS is offered to patients outside of the research setting.

There is an ongoing debate in medicine about whether patients have a ‘right not to know’ pertinent medical information, such as diagnoses of life-altering diseases. While this debate has employed various ethical concepts, probably the most widely-used by both defenders and detractors of the right is autonomy. Whereas defenders of the right not to know typically employ a ‘liberty’ conception of autonomy, according to which to be autonomous involves doing what one wants to do, opponents of the right not to know often employ a ‘duty’ understanding, viewing autonomy as involving an obligation to be self-governing. The central contribution of this paper is in showing that neither view of autonomy can reasonably be said to support the extreme stances on the right not to know that they are sometimes taken to. That is, neither can a liberty view properly defend a right not to know without limits, nor can a duty view form the basis of an absolute rejection of the right not to know. While there is still theoretical distance between these two approaches, we conclude that the views are considerably closer on this issue than they first appear, opening the way for a possible compromise.

BACKGROUND: While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients. METHODS: We conducted semi-structured interviews with 31 GHPs across Europe, Australia and Canada to identify some of these challenges. RESULTS: Our results show that GHPs find it difficult to prepare patients to receive results because a vast amount of information is required to fully inform patients about VUS and UF. GHPs also struggle to engage patients - many of whom may be focused on ending their 'diagnostic odyssey' - in the informed consent process in a meaningful way. Thus, some questioned how 'informed' patients actually are when they agree to undergo clinical genomic sequencing. CONCLUSIONS: These findings suggest a tension remains between sufficient information provision at the risk of overwhelming the patient and imparting less information at the risk of uninformed decision-making. We suggest that a shift away from 'fully informed consent' toward an approach aimed at realizing, as far as possible, the underlying goals that informed consent is meant to promote. ispartof: AJOB Empir Bioeth vol:12 issue:1 pages:12-23 ispartof: location:United States status: published

The COVID-19 pandemic has led a number of countries to introduce restrictive ‘lockdown’ policies on their citizens in order to control infection spread. Immunity passports have been proposed as a way of easing the harms of such policies, and could be used in conjunction with other strategies for infection control. These passports would permit those who test positive for COVID-19 antibodies to return to some of their normal behaviours, such as travelling more freely and returning to work. The introduction of immunity passports raises a number of practical and ethical challenges. In this paper, we seek to review the challenges relating to various practical considerations, fairness issues, the risk to social cooperation and the impact on people’s civil liberties. We make tentative recommendations for the ethical introduction of immunity passports.

While a human challenge study holds the prospect of accelerating the development of a vaccine for the coronavirus SARS-CoV-2, it may be opposed due to risks of harm to participants and researchers. Given the increasing number of human deaths and severe disruption to lives worldwide, we argue that a SARS-CoV-2 challenge study is ethically justifiable as its social value substantially outweighs the risks. Such a study should therefore be seriously considered as part of the global research response towards the COVID-19 pandemic. In this paper, we contribute to the debate by addressing the misperception that a challenge study for the coronavirus would lower scientific and ethical standards for vaccine research and development, and examine how it could be ethically conducted. We also set out information that needs to be disclosed to prospective participants to obtain their consent.

Non-invasive prenatal testing (NIPT) can determine the sex of the fetus very accurately and very early in gestation. There are concerns that the ease, timing, and accuracy of NIPT sex determination will facilitate sex-selective termination of pregnancy (TOP). Here, we review current practices, the evidence for a link between NIPT and sex-selective TOP, and associated ethical issues. Sex-selective TOP, usually motivated by son preference, has had serious demographic consequences in countries such as India and China. Currently, ultrasound is the primary method by which parents determine the sex of the fetus. The diffusion of ultrasound technology has had a direct impact on the rates of sex-selective TOP. Although NIPT is currently more costly, it is feasible that increased uptake of this technology could have a similar effect. Partly because NIPT is a relatively recent development in prenatal screening, there is little data on the impact of NIPT on sex selection practices. Evidence that NIPT is playing a role in sex-selective TOP remains largely anecdotal. Further research is required to assess and quantify TOP resulting from NIPT sex determination. The use of these technologies for sex selection raises a number of ethical issues, in addition to practical demographic consequences. usc Refereed/Peer-reviewed

Imaging research regularly yields incidental findings that may have personal medical or reproductive decision‐making significance to study participants. It is widely assumed that researchers have a moral obligation to disclose at least some kinds of incidental findings to research participants. However, it is also a widely held view that researchers do not have a moral obligation to actively look for abnormalities irrelevant to the aims of their study. This paper challenges that assumption.

BackgroundIn the early stages of the COVID-19 pandemic, many health systems, including those in the UK, developed triage guidelines to manage severe shortages of ventilators. At present, there is an insufficient understanding of how the public views these guidelines, and little evidence on which features of a patient the public believe should and should not be considered in ventilator triage.MethodsTwo surveys were conducted with representative UK samples. In the first survey, 525 participants were asked in an open-ended format to provide features they thought should and should not be considered in allocating ventilators for COVID-19 patients when not enough ventilators are available. In the second survey, 505 participants were presented with 30 features identified from the first study, and were asked if these features should count in favour of a patient with the feature getting a ventilator, count against the patient, or neither. Statistical tests were conducted to determine if a feature was generally considered by participants as morally relevant and whether its mean was non-neutral.ResultsIn Survey 1, the features of a patient most frequently cited as being morally relevant to determining who would receive access to ventilators were age, general health, prospect of recovery, having dependents, and the severity of COVID symptoms. The features most frequently cited as being morally irrelevant to determining who would receive access to ventilators are race, gender, economic status, religion, social status, age, sexual orientation, and career. In Survey 2, the top three features that participants thought should count in favour of receiving a ventilator were pregnancy, having a chance of dying soon, and having waited for a long time. The top three features that participants thought should count against a patient receiving a ventilator were having committed violent crimes in the past, having unnecessarily engaged in activities with a high risk of COVID-19 infection, and a low chance of survival.ConclusionsThe public generally agreed with existing UK guidelines that allocate ventilators according to medical benefits and that aim to avoid discrimination based on demographic features such as race and gender. However, many participants expressed potentially non-utilitarian concerns, such as inclining to deprioritise ventilator allocation to those who had a criminal history or who contracted the virus by needlessly engaging in high-risk activities.

Numerous countries and jurisdictions have implemented differential COVID-19 public health restrictions based on individual vaccination status to mitigate the public health risks posed by unvaccinated individuals. Although it is scientifically and ethically justifiable to introduce such vaccination-based differentiated measures as a risk-based approach to resume high-risk activities in an ongoing pandemic, their justification is weakened by lack of clarity on their intended goals and the specific risks or potential harms they intend to mitigate. Furthermore, the criteria for the removal of differentiated measures may not be clear, which raises the possibility of shifting goalposts without clear justification and with potential for unfairly discriminatory consequences. This paper seeks to clarify the ethical justification of COVID-19 vaccination-based differentiated measures based on a public health risk-based approach, with focus on their deployment in domestic settings. We argue that such measures should be consistent with the principal goal of COVID-19 vaccination programmes, which is to reduce the incidence of severely ill patients and associated healthcare burdens so as to protect a health system. We provide some considerations for the removal of vaccination-based differentiated measures based on this goal.

This paper clarifies and defends against criticism our argument in Unfit for the Future that there is no moral right to privacy. A right to privacy is conceived as a right that others do not acquire information about us that we reserve for ourselves and selected others. Information acquisition itself is distinguished from the means used to acquire it and the uses to which the information is put. To acquire information is not an action; it is to be caused to be in an internal state. By contrast, means of acquisition and uses of information are actions that can be voluntarily controlled. We can therefore have rights against others that they stay away from certain means and uses but not from information acquisition in itself. An omniscient, omnipotent and omnibeneficient being is not thought to violate a right to privacy because its means and uses of information are morally acceptable.

This chapter takes a fresh look at the non-identity problem and presents a partial solution that is different from those that have so far been attempted. Its solution focuses on Parfit’s remark that, if a person born from a ‘different people choice’ has a life worth living, and so does not regret existing, the decision wrongs no one. But some ‘different people choices’ can produce people who regret being born even though they are glad to be alive and have lives worth living. These cases have so far not been discussed in the literature on the non-identity problem, and seem to escape the paradoxical conclusions that Parfit draws in other ‘different people choices’. This chapter argues that the chance of future regret provides a reason not to select a given embryo or possible person.

In early 2021, cases of rare adverse events were observed in individuals who had received the Astra Zeneca COVID-19 vaccine. Countries around the world differed radically in their policy responses to these observations. In this paper, we outline the ethical justification for different policy approaches for managing the emerging risks of novel vaccines in a pandemic. We begin by detailing the precautionary approach that some countries adopted, and distinguishing ethical questions regarding the management of known and unknown risks. We go on to outline the harms of adopting a highly precautionary approach in a pandemic context, and explain why an appropriate policy approach should accommodate the benefits as well as the risks of vaccination. In the final section, we outline three policy approaches that can accommodate the different benefits of vaccination, whilst taking into account the harms of precaution. Whilst we do not set out to defend one particular policy approach, we explain how different moral theories lend different degrees of support to each of these different approaches. Our analysis elucidates how fundamental value conflicts in public health ethics played out on the global stage of vaccine policy.

We argue that, in certain circumstances, doctors might beprofessionallyjustified to provide abortions even in those jurisdictions where abortion is illegal. That it is at least professionally permissible does not mean that they have an all-things-considered ethical justification or obligation to provide illegal abortions or that professional obligations or professional permissibility trump legal obligations. It rather means that professional organisations should respect and indeed protect doctors’ positive claims of conscience to provide abortions if they plausibly track what is in the best medical interests of their patients. It is the responsibility of state authorities to enforce the law, but it is the responsibility of professional organisations to uphold the highest standards of medical ethics, even when they conflict with the law. Whatever the legal sanctions in place, healthcare professionals should not be sanctioned by the professional bodies for providing abortions according to professional standards, even if illegally. Indeed, professional organisation should lobby to offer protection to such professionals. Our arguments have practical implications for what healthcare professionals and healthcare professional organisations may or should do in those jurisdictions that legally prohibit abortion, such as some US States after the reversal ofRoe v Wade.

Institutional objection (IO) occurs when institutions providing health care claim objector status and refuse to provide legally permissible health services such as abortion. IO may be regulated by sources including law, ethical codes and policies (including State and local/institutional policies). We conducted a mixed-methods narrative review of the empirical evidence exploring IO to abortion provision globally, to inform areas for further research. MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCO), Global Health (CAB Abstracts), ScienceDirect and Scopus were searched in August 2021 using keywords including ‘conscientious objection’, ‘faith-based organizations’, ‘religious hospitals’ and ‘abortion’. Eligible research focused on clinicians’ attitudes and experiences of IO to abortion. The 28 studies included in the review were from nine countries: United States (19), Chile (2), Turkey (1), Argentina (1), Australia (1), Colombia (1), Ghana (1), Poland (1) and South Africa (1). The analysis demonstrated that IO was claimed in a range of countries, despite different legislative and policy frameworks. There was strong evidence from the United States that clinicians in religious healthcare institutions were less likely to provide abortions and abortion referrals, and that training of future abortion providers was negatively affected by IO. Qualitative evidence from other countries showed that IO was claimed by secular as well as religious institutions, and individual conscientious objection could be used as a mechanism for imposing IO. Further research is needed to explore whether IO is morally justified, how decisions are made to claim IO, and on what grounds. Finally, appropriate models for regulating IO are needed to ensure the protection of women’s access to abortion. Such models could be informed by those used to regulate IO in other contexts, such as voluntary assisted dying.

In principle, mandatory vaccination in employment could be justified in certain circumstances. These include: (1) the availability of safe and effective vaccination; (2) if alternative, less coercive strategies did not work; and, (3) the costs to the individual were proportionate. However, in COVID-19, the long term safety of vaccines is yet to be established. Vaccines should be made available by employers, and voluntary vaccination encouraged.