The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional (...) Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency. (shrink)

Some have objected to human enhancement on the grounds that it violates the autonomy of the enhanced. These objections, however, overlook the interesting possibility that autonomy itself could be enhanced. How, exactly, to enhance autonomy is a difficult problem due to the numerous and diverse accounts of autonomy in the literature. Existing accounts of autonomy enhancement rely on narrow and controversial conceptions of autonomy. However, we identify one feature of autonomy common to many mainstream accounts: reasoning ability. Autonomy can then (...) be enhanced by improving people’s reasoning ability, in particular through cognitive enhancement; given how valuable autonomy is usually taken to be, this gives us extra reason to pursue such cognitive enhancements. Moreover, autonomy-based objections will be especially weak against such enhancements. As we will argue, those who are worried that enhancements will inhibit people’s autonomy should actually embrace those enhancements that will improve autonomy. (shrink)

In this article, we propose the Fair Priority Model for COVID-19 vaccine distribution, and emphasize three fundamental values we believe should be considered when distributing a COVID-19 vaccine among countries: Benefiting people and limiting harm, prioritizing the disadvantaged, and equal moral concern for all individuals. The Priority Model addresses these values by focusing on mitigating three types of harms caused by COVID-19: death and permanent organ damage, indirect health consequences, such as health care system strain and stress, as well as (...) economic destruction. It proposes proceeding in three phases: the first addresses premature death, the second long-term health issues and economic harms, and the third aims to contain viral transmission fully and restore pre-pandemic activity. -/- To those who may deem an ethical framework irrelevant because of the belief that many countries will pursue "vaccine nationalism," we argue such a framework still has broad relevance. Reasonable national partiality would permit countries to focus on vaccine distribution within their borders up until the rate of transmission is below 1, at which point there would not be sufficient vaccine-preventable harm to justify retaining a vaccine. When a government reaches the limit of national partiality, it should release vaccines for other countries. -/- We also argue against two other recent proposals. Distributing a vaccine proportional to a country's population mistakenly assumes that equality requires treating differently situated countries identically. Prioritizing countries according to the number of front-line health care workers, the proportion of the population over 65, and the number of people with comorbidities within each country may exacerbate disadvantage and end up giving the vaccine in large part to wealthy nations. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...) Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

Moral enhancement is an ostensibly laudable project. Who wouldn’t want people to become more moral? Still, the project’s approach is crucial. We can distinguish between two approaches for moral enhancement: direct and indirect. Direct moral enhancements aim at bringing about particular ideas, motives or behaviors. Indirect moral enhancements, by contrast, aim at making people more reliably produce the morally correct ideas, motives or behaviors without committing to the content of those ideas, motives and/or actions. I will argue, on Millian grounds, (...) that the value of disagreement puts serious pressure on proposals for relatively widespread direct moral enhancement. A more acceptable path would be to focus instead on indirect moral enhancements while staying neutral, for the most part, on a wide range of substantive moral claims. I will outline what such indirect moral enhancement might look like, and why we should expect it to lead to general moral improvement. (shrink)

The current prevailing view is that participation in biomedical research is above and beyond the call of duty. While some commentators have offered reasons against this, we propose a novel public goods argument for an obligation to participate in biomedical research. Biomedical knowledge is a public good, available to any individual even if that individual does not contribute to it. Participation in research is a critical way to support an important public good. Consequently, all have a duty to participate. The (...) current social norm is that individuals participate only if they have a good reason to do so. The public goods argument implies that individuals should participate unless they have a good reason not to. Such a shift would be of great aid to the progress of biomedical research, eventually making society significantly healthier and longer lived. (shrink)

For people to contribute to discourse, they must do more than utter the right sentence at the right time. The basic requirement is that they add to their common ground in an orderly way. To do this, we argue, they try to establish for each utterance the mutual belief that the addressees have understood what the speaker meant well enough for current purposes. This is accomplished by the collective actions of the current contributor and his or her partners, and these (...) result in units of conversation called contributions. We present a model of contributions and show how it accounts for a variety of features of everyday conversations. (shrink)

This paper argues that one problem that besets black-box AI is that it lacks algorithmic justifiability. We argue that the norm of shared decision making in medical care presupposes that treatment decisions ought to be justifiable to the patient. Medical decisions are justifiable to the patient only if they are compatible with the patient’s values and preferences and the patient is able to see that this is so. Patient-directed justifiability is threatened by black-box AIs because the lack of rationale provided (...) for the decision makes it difficult for patients to ascertain whether there is adequate fit between the decision and the patient’s values. This paper argues that achieving algorithmic transparency does not help patients bridge the gap between their medical decisions and values. We introduce a hypothetical model we call Justifiable AI to illustrate this argument. Justifiable AI aims at modelling normative and evaluative considerations in an explicit way so as to provide a stepping stone for patient and physician to jointly decide on a course of treatment. If our argument succeeds, we should prefer these justifiable models over alternatives if the former are available and aim to develop said models if not. (shrink)

While philosophers are often concerned with the conditions for moral knowledge or justification, in practice something arguably less demanding is just as, if not more, important – reliably making correct moral judgments. Judges and juries should hand down fair sentences, government officials should decide on just laws, members of ethics committees should make sound recommendations, and so on. We want such agents, more often than not and as often as possible, to make the right decisions. The purpose of this paper (...) is to propose a method of enhancing the moral reliability of such agents. In particular, we advocate for a procedural approach; certain internal processes generally contribute to people’s moral reliability. Building on the early work of Rawls, we identify several particular factors related to moral reasoning that are specific enough to be the target of practical intervention: logical competence, conceptual understanding, empirical competence, openness, empathy and bias. Improving on these processes can in turn make people more morally reliable in a variety of contexts and has implications for recent debates over moral enhancement. (shrink)

Using emotional film clips is one of the most popular and effective methods of emotion elicitation. The main goal of the present study was to develop and test the effectiveness of a new and comprehensive set of emotional film excerpts. Fifty film experts were asked to remember specific film scenes that elicited fear, anger, sadness, disgust, amusement, tenderness, as well as emotionally neutral scenes. For each emotion, the 10 most frequently mentioned scenes were selected and cut into film clips. Next, (...) 364 participants viewed the film clips in individual laboratory sessions and rated each film on multiple dimensions. Results showed that the film clips were effective with regard to several criteria such as emotional discreteness, arousal, positive and negative affect. Finally, ranking scores were computed for 24 classification criteria: Subjective arousal, positive and negative affect (derived from the PANAS; Watson & Tellegen, 1988), a positive and a negative affect scores derived from the Differential Emotions Scale (DES; Izard et al., 1974), six emotional discreteness scores (for anger, disgust, sadness, fear, amusement and tenderness), and 15 “mixed feelings” scores assessing the effectiveness of each film excerpt to produce blends of specific emotions. In addition, a number of emotionally neutral film clips were also validated. The database and editing instructions to construct the film clips have been made freely available in a website. (shrink)

The prospect of consumable meat produced in a laboratory setting without the need to raise and slaughter animals is both realistic and exciting. Not only could such in vitro meat become popular due to potential cost savings, but it also avoids many of the ethical and environmental problems with traditional meat productions. However, as with any new technology, in vitro meat is likely to face some detractors. We examine in detail three potential objections: 1) in vitro meat is disrespectful, either (...) to nature or to animals; 2) it will reduce the number of happy animals in the world; and 3) it will open the door to cannibalism. While each objection has some attraction, we ultimately find that all can be overcome. The upshot is that in vitro meat production is generally permissible and, especially for ethical vegetarians, worth promoting. (shrink)

It has recently been argued that reproductive genetic manipulation technologies like mitochondrial replacement and germline CRISPR modifications cannot be said to save anyone’s life because, counterfactually, no one would suffer more or die sooner absent the intervention. The present article argues that, on the contrary, reproductive genetic manipulations may be life-saving (and, from this, have therapeutic value) under an appropriate population health perspective. As such, popular reports of reproductive genetic manipulations potentially saving lives or preventing disease are not necessarily mistaken, (...) though such terminology still requires further empirical validation. (shrink)

The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when research is judged to be of (...) particular value. However, several different terms are used to refer to this value, indicating a lack of conceptual clarity regarding the appropriate test for access to health data for research without consent. In this paper we do three things. First we describe the current confusion and instability in terminology relating to public interest in the context of consent waivers. Second we argue for harmonisation of terminology on the grounds of clarity, transparency and consistency. Third we argue that the term ‘public interest’ best reflects the normative work required to justify consent waivers because it is the broadest of the competing terms. ‘Public interest’ contains within its scope positive and negative implications of a study, as well as welfare, justice and rights considerations. In making this argument, we explain the normative basis for consent waivers, and provide a starting place for further discussion about the precise conditions in which a given study can be said to advance the public interest. Ipsos MORI study found that: … the public would be broadly happy with administrative data linking for research projects provided Those projects have social value, broadly defined. Data are de-identified. Data are kept secure. Businesses are not able to access the data for profit. (shrink)

All parties involved in researching, developing, manufacturing, and distributing COVID-19 vaccines need guidance on their ethical obligations. We focus on pharmaceutical companies' obligations because their capacities to research, develop, manufacture, and distribute vaccines make them uniquely placed for stemming the pandemic. We argue that an ethical approach to COVID-19 vaccine production and distribution should satisfy four uncontroversial principles: optimising vaccine production, including development, testing, and manufacturing; fair distribution; sustainability; and accountability. All parties' obligations should be coordinated and mutually consistent. For (...) instance, companies should not be obligated to provide host countries with additional booster shots at the expense of fulfilling bilateral contracts with countries in which there are surges. Finally, any satisfactory approach should include mechanisms for assurance that all parties are honouring their obligations. This assurance enables countries, pharmaceutical companies, global organisations, and others to verify compliance with the chosen approach and protect ethically compliant stakeholders from being unfairly exploited by unethical behaviour of others. (shrink)

The right to withdraw from participation in research is recognized in virtually all national and international guidelines for research on human subjects. It is therefore surprising that there has been little justification for that right in the literature. We argue that the right to withdraw should protect research participants from information imbalance, inability to hedge, inherent uncertainty, and untoward bodily invasion, and it serves to bolster public trust in the research enterprise. Although this argument is not radical, it provides a (...) useful way to determine how the right should be applied in various cases. (shrink)

The COVID-19 pandemic has both exposed and created deep rifts in society. It has thrust us into deep ethical thinking to help justify the difficult decisions many will be called upon to make and to protect from decisions that lack ethical underpinnings. This paper aims to highlight ethical issues in six different areas of life highlighting the enormity of the task we are faced with globally. In the context of COVID-19, we consider health inequity, dilemmas in triage and allocation of (...) scarce resources, ethical issues associated with research, ethical considerations relating to tracing apps, and exit strategies such as immunity passports and COVID-19 vaccines. Finally, we consider environmental issues in light of COVID-19. The paper also offers some ethical reflection on these areas as many parts of the world contemplate the recovery phase. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to (...) the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

Moral disengagement was initially conceptualized as a process through which people reconstrue unethical behaviors, with the effect of deactivating self-sanctions and thereby clearing the way for ethical transgressions. Our article challenges how researchers now conceptualize moral disengagement. The current literature is overly liberal, in that it mixes two related but distinct constructs—process moral disengagement and the propensity to morally disengage—creating ambiguity in the findings. It is overly conservative, as it adopts a challengeable classification scheme of “four points in moral self-regulation” (...) and perpetuates defining moral disengagement via a set of eight psychological mechanisms, narrowing our understanding of the phenomenon. To address these problems, we propose to define process moral disengagement intensionally (specifying the necessary and sufficient conditions for correct application of the term) as intrapsychic cognitive reasoning processes through which people selectively reconstrue a moral judgment “behavior B by actor A is morally wrong” and shift it toward becoming “behavior B is not morally wrong” or “actor A is not responsible for behavior B.” This definition achieves disambiguation and increased concept clarity. We leverage the definition to motivate a classification scheme for psychological mechanisms of moral disengagement along two dimensions—reconstruing morality and reconstruing agency—and to initiate an open inventory of psychological mechanisms that specify how process moral disengagement operates. (shrink)

High degrees of uncertainty and a lack of effective therapeutic treatments have characterized the COVID-19 pandemic and the provision of drug products outside research settings has been controversial. International guidelines for providing patients with experimental interventions to treat infectious diseases outside of clinical trials exist but it is unclear if or how they should apply in settings where clinical trials and research are strongly regulated. We propose the Professional Oversight of Emergency-Use Interventions and Monitoring System as an alternative pathway based (...) on guidance developed for the ethical provision of experimental interventions to treat COVID-19 in Singapore. We support our proposal with justifications that establish moral duties for physicians to record outcomes data and for institutions to establish monitoring systems for reporting information on safety and effectiveness to the relevant authorities. Institutions also have a duty to support generation of evidence for what constitutes good clinical practice and so should ensure the unproven intervention is made the subject of research studies that can contribute to generalizable knowledge as soon as practical and that physicians remain committed to supporting learning health systems. We outline key differences between POEIMS and other pathways for the provision of experimental interventions in public health emergencies. (shrink)

The COVID-19 pandemic revealed numerous weaknesses in pandemic preparedness and response, including underfunding, inadequate surveillance, and inequitable distribution of countermeasures. To overcome these weaknesses for future pandemics, WHO released a zero draft of a pandemic treaty in February, 2023, and subsequently a revised bureau's text in May, 2023. COVID-19 made clear that pandemic prevention, preparedness, and response reflect choices and value judgements. These decisions are therefore not a purely scientific or technical exercise, but are fundamentally grounded in ethics. The latest (...) treaty draft reflects these ethical considerations by including a section entitled Guiding Principles and Approaches. Most of these principles are ethical—they establish core values that undergird the treaty. Unfortunately, the treaty draft's set of principles are numerous, overlapping, and show inadequate coherence and consistency. We propose two improvements to this section of the draft pandemic treaty. First, key guiding ethical principles should be clearer and more precise than they currently are. Second, the link between ethical principles and policy implementation should be clearly established and define boundaries on acceptable interpretation, ensuring that signatories abide by these principles. (shrink)

Music can reduce stress and anxiety, enhance positive mood, and facilitate social bonding. However, little is known about the role of music and related personal or cultural variables in maintaining wellbeing during times of stress and social isolation as imposed by the COVID-19 crisis. In an online questionnaire, administered in 11 countries, participants rated the relevance of wellbeing goals during the pandemic, and the effectiveness of different activities in obtaining these goals. Music was found to be the most effective activity (...) for three out of five wellbeing goals: enjoyment, venting negative emotions, and self-connection. For diversion, music was equally good as entertainment, while it was second best to create a sense of togetherness, after socialization. This result was evident across different countries and gender, with minor effects of age on specific goals, and a clear effect of the importance of music in people's lives. Cultural effects were generally small and surfaced mainly in the use of music to obtain a sense of togetherness. Interestingly, culture moderated the use of negatively valenced and nostalgic music for those higher in distress. (shrink)

COVID-19 vaccines are likely to be scarce for years to come. Many countries, from India to the U.K., have demonstrated vaccine nationalism. What are the ethical limits to this vaccine nationalism? Neither extreme nationalism nor extreme cosmopolitanism is ethically justifiable. Instead, we propose the fair priority for residents framework, in which governments can retain COVID-19 vaccine doses for their residents only to the extent that they are needed to maintain a noncrisis level of mortality while they are implementing reasonable public (...) health interventions. Practically, a noncrisis level of mortality is that experienced during a bad influenza season, which society considers an acceptable background risk. Governments take action to limit mortality from influenza, but there is no emergency that includes severe lockdowns. This “flu-risk standard” is a nonarbitrary and generally accepted heuristic. Mortality above the flu-risk standard justifies greater governmental interventions, including retaining vaccines for a country's own citizens over global need. The precise level of vaccination needed to meet the flu-risk standard will depend upon empirical factors related to the pandemic. This links the ethical principles to the scientific data emerging from the emergency. Thus, the FPR framework recognizes that governments should prioritize procuring vaccines for their country when doing so is necessary to reduce mortality to noncrisis flu-like levels. But after that, a government is obligated to do its part to share vaccines to reduce risks of mortality for people in other countries. We consider and reject objections to the FPR framework based on a country: having developed a vaccine, raising taxes to pay for vaccine research and purchase, wanting to eliminate economic and social burdens, and being ineffective in combating COVID-19 through public health interventions. (shrink)

This paper considers contractarianism as a method of justification. The analysis accepts the key tenets of contractarianism: expected utility maximization, unanimity as the criteria of acceptance, and social-scientific uncertainty of modelled agents. In addition to these three features, however, the analysis introduces a fourth feature: a criteria of rational belief formation, viz. Bayesian belief updating. Using a formal model, this paper identifies a decisive objection to contractarian justification. Insofar as contractarian projects approximate the Agreement Model, therefore, they fail to justify (...) their conclusions. Insofar as they fail to approximate the Agreement Model, they must explain which modelling assumption they reject. (shrink)

According to Hobbes, individuals care about their relative standing in a way that shapes their social interactions. To model this aspect of Hobbesian psychology, this paper supposes that agents have social preferences, that is, preferences about their comparative resource holdings. Introducing uncertainty regarding the social preferences of others unleashes a process of trust-unravelling, ultimately leading to Hobbes’s ‘state of war’. This Trust-unravelling Model incorporates important features of Hobbes’s argument that past models ignore.

Background We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research. Methods We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages and analysed with qualitative content and thematic analysis. Results Four (...) key themes emerged: nuanced understandings of data security and data sensitivity; trade-offs between data protection and research benefits; trust in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore. Conclusion Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective. (shrink)

The “best-medical-interests” standard for reporting findings does not go far enough. Research subjects have a right to know about any comprehensible piece of information about them that is generated by research in which they are participating. An even broader standard may sometimes be appropriate: if subjects agree to accept information that they may not understand, then all information may be disclosed.

The integration of artificial intelligence (AI), particularly large language models (LLMs) like OpenAI’s ChatGPT, into clinical research could significantly enhance the informed consent process. This paper critically examines the ethical implications of employing LLMs to facilitate consent in clinical research. LLMs could offer considerable benefits, such as improving participant understanding and engagement, broadening participants’ access to the relevant information for informed consent and increasing the efficiency of consent procedures. However, these theoretical advantages are accompanied by ethical risks, including the potential (...) for misinformation, coercion and challenges in accountability. Given the complex nature of consent in clinical research, which involves both written documentation (in the form of participant information sheets and informed consent forms) and in-person conversations with a researcher, the use of LLMs raises significant concerns about the adequacy of existing regulatory frameworks. Institutional Review Boards (IRBs) will need to consider substantial reforms to accommodate the integration of LLM-based consent processes. We explore five potential models for LLM implementation, ranging from supplementary roles to complete replacements of current consent processes, and offer recommendations for researchers and IRBs to navigate the ethical landscape. Thus, we aim to provide practical recommendations to facilitate the ethical introduction of LLM-based consent in research settings by considering factors such as participant understanding, information accuracy, human oversight and types of LLM applications in clinical research consent. (shrink)

The development of some COVID-19 vaccines by private companies like Moderna and Sanofi-GSK has been substantially funded by various governments. While the Sanofi CEO has previously suggested that countries that fund this development ought to be given some priority, this suggestion has not been taken seriously in the literature. Considerations of nationalism, sustainability, need, and equitability have been more extensively discussed with respect to whether and how much a country is entitled to advance purchase orders of the vaccine under conditions (...) of absolute scarcity. Yet, little attention has been paid to whether prior investment into developing a vaccine entitles a country to some priority with respect to these orders. Moreover, while not a majority view, some survey results show that a significant minority of the populace does endorse some view like this. This article argues that the minority have a point: recognizing funder countries some priority is justified by the weak Lockean claim (WLC). According to the WLC, the fact that someone has contributed to the development of something gives them some entitlement to the resultant product. This article will defend the WLC, and address objections to the argument, including those pertaining to questions of historical injustice and medical need. This argument does not imply an unconstrained entitlement. Rather, contribution to development is one morally relevant factor that must be tempered by and weighed against potentially more substantial claims to priority based on need, equity, and other considerations. (shrink)

This article proposes to identify risk factors for moral distress from the literature, validate them through expert analysis and provide the basis for a new tool to assess the risk of moral distress among nurses. Moral distress is related to the psychological, emotional and physiological aspects of nursing. It arises from constraints caused by various circumstances and can lead to significant negative consequences. A scoping review and validation through expert analysis were used. The research question guiding this study was as (...) follows: What is known about risk factors for moral distress in nursing? The research was conducted using multiple sources including electronic databases and lists of references from relevant literature. The final sample consisted of 38 studies. A validation analysis was conducted by experts during December 2014 and June 2015. To exclude a risk factor item, at least 80% of the experts had to agree with the exclusion. In total, 53 risk factors for moral distress were identified, reviewed by the experts and grouped to form a new instrument that may help to identify risk for moral distress and to address its consequences. (shrink)

We study the values on which managers of small and medium-sized enterprises (SMEs) draw when constructing their personal and organizational-level engagement with environmental issues, particularly climate change. Values play an important mediating role in business environmental engagement, but relatively little research has been conducted on individual values in smaller organizations. Using the Schwartz Value System (SVS) as a framework for a qualitative analysis, we identify four “ideal-types” of SME managers and provide rich descriptions of the ways in which values shape (...) their constructions of environmental engagement. In contrast to previous research, which is framed around a binary divide between self-enhancing and self-transcending values, our typology distinguishes between individuals drawing primarily on Power or on Achievement values and indicates how a combination of Achievement and Benevolence values is particularly significant in shaping environmental engagement. This demonstrates the theoretical usefulness of focusing on a complete range of values. Implications for policy and practice are discussed. (shrink)

Mitochondrial replacement therapy requires oocytes of women whose mitochondrial DNA will be transmitted to resultant children. These techniques are scientifically, ethically and socially controversial; it is likely that some women who donate their oocytes for general in vitro fertilisation usage would nevertheless oppose their genetic material being used in MRT. The possibility of oocytes being used in MRT is therefore relevant to oocyte donation and should be included in the consent process when applicable. In present circumstances, specific consent should be (...) obtained. However, once MRT becomes more routine, such consent could be incorporated into the general consent process for oocyte donation. The reported lack of proper consent for MRT from the oocyte donor in the first baby born via the technique is an ethical failing and should be corrected in any future practice of MRT. (shrink)

Background Several jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using secondary health data or tissue. However, the concept of the public interest is not well defined in this context, which creates difficulties for institutions, institutional review boards and regulators trying to implement the criterion. Main text This paper clarifies how the public interest criterion can be defensibly deployed. We first explain the (...) ethical basis for requiring waivers to only be granted to studies meeting the public interest criterion, then explore how further criteria may be set to determine the extent to which a given study can legitimately claim to be in the public interest. We propose an approach that does not attempt to measure magnitude of benefit directly, but rather takes into account metrics that are more straightforward to apply. To ensure consistent and justifiable interpretation, research institutions and IRBs should also incorporate procedural features such as transparency and public engagement in determining which studies satisfy the public interest requirement. Conclusion The requirement of public interest for consent waivers in secondary biomedical research should be guided by well-defined criteria for systematic evaluation. Such a criteria and its application need to be periodically subject to intra-committee and intra-institution review, reflection, deliberation and amendment. (shrink)

It is generally unquestioned that human subjects research review boards should assess the ethical acceptability of protocols. It says so right on the tin, after all: they are explicitly called research ethics committees in the UK. But it is precisely those sorts of unchallenged assumptions that should, from time to time, be assessed and critiqued, in case they are in fact unfounded. John Stuart Mill's objection to suppressers of dissent is instructive here: “If the opinion is right, they are deprived (...) of the opportunity of exchanging error for truth: if wrong, they lose, what is almost as great a benefit, the clearer perception and livelier impression of truth, produced by its collision with error”.1 Andrew Moore and Andrew Donnelly's compelling article, “The job of ‘ethics committees’”, is just this sort of challenge to conventional wisdom, a rejection of the notion that review boards should be considering ethical matters at all.2 If true, we should be substantially reforming our research ethics policies. And if false, rebuttals would help strengthen and ground the otherwise unquestioned assumption of the role of ethics committees. As it happens, I will argue that their critiques fall into the second category. While mistaken, they present a valuable opportunity to clarify the role of ethics committees and their relationship to relevant codes. In particular, I will defend a hybrid account where codes have strict primacy, but leave significant room for review boards …. (shrink)

Given the sordid history of injustices linking genetics to race and ethnicity, considerations of justice are central to ensuring the responsible development of precision medicine programmes around the world. While considerations of justice may be in tension with other areas of concern, such as scientific value or privacy, there are also tensions between different aspects of justice. This paper focuses on three particular aspects of justice relevant to this precision medicine: social justice, distributive justice and human rights. We describe the (...) implications of each for the use of race and ethnicity in precision medicine, and also how they intersect and potentially conflict with each another. By attending to these intersections, we aim to enrich and add nuance to debates over how best to proceed with precision medicine initiatives. (shrink)

Polygenic risk scores (PRSs) have recently been used to inform reproductive decision-making in the context of embryonic screening. While this is yet to be widespread, it is contested and raises several challenges. This article provides an overview of some of the ethical considerations that arise with using PRSs for embryo screening and offers a series of regulatory considerations for jurisdictions that may wish to permit this in the future. These regulatory considerations cover possible regulators and regulatory tools, eligibility criteria, information (...) and education requirements and the need for ongoing refinement of the relevant technology, research and consultation. (shrink)

A strength of liberal political institutions is their ability to accommodate pluralism, both allowing divergent comprehensive doctrines as well as constructing the common ground necessary for diverse people to live together. A pressing question is how far such pluralism extends. Which comprehensive doctrines are simply beyond the pale and need not be accommodated by a political consensus? Rawls attempted to keep the boundaries of reasonable disagreement quite broad by infamously denying that political liberalism need make reference to the concept of (...) truth, a claim that has been criticized by Joseph Raz, Joshua Cohen, and David Estlund. In this paper, we argue that these criticisms fail due to the fact that political liberalism can remain non-committal on the nature of truth, leaving the concept of truth in the domain of comprehensive doctrines while still avoiding the issues raised by Raz, Cohen, and Estlund. Further substantiating this point is the fact that Rawls would, and should, include parties in the overlapping consensus whose views on truth may be incoherent. Once it is seen that political liberalism allows such incoherence to reasonable parties, it is clear that the inclusion of truth and the requirement of coherence urged by Raz, Cohen, and Estlund requires more of reasonable people than is necessary for a political consensus. (shrink)

The success of digital COVID-19 contact tracing requires a strategy that successfully addresses the digital divide—inequitable access to technology such as smartphones. Lack of access both undermines the degree of social benefit achieved by the use of tracing apps, and exacerbates existing social and health inequities because those who lack access are likely to already be disadvantaged. Recently, Singapore has introduced portable tracing wearables (with the same functionality as a contact tracing app) to address the equity gap and promote public (...) health. We argue that governments have an ethical obligation to ensure fair access to the protective benefits of contract tracing during the pandemic and that wearables are an effective way of addressing some important equity issues. The most contentious issues about contact tracing apps have been the potential infringements of privacy and individual liberty, especially where the use of apps or other technology (such as wearables or QR codes) is required for access to certain spaces. Here we argue that wearables, as opposed to apps alone, will make a digital contact tracing mandate more practical and explain some conditions under which such a mandate would be justified. We focus on Singapore as a case study that has recently deployed contact tracing wearables nationally, but also reference debate about wearables in Australia and New Zealand. Our analysis will be relevant to counties trialling similar portable tracing wearables. (shrink)

Background: Moral distress is a kind of suffering that nurses may experience when they act in ways that are considered inconsistent with moral values, leading to a perceived compromise of moral integrity. Consequences are mostly negative and include physical and psychological symptoms, in addition to organizational implications. Objective: To psychometrically test the Moral Distress Risk Scale. Research design: A methodological study was realized. Data were submitted to exploratory factorial analysis through the SPSS statistical program. Participants and research context: In total, (...) 268 nurses from hospitals and primary healthcare settings participated in this research during the period of March to June of 2016. Ethical considerations: This research has ethics committee approval. Findings: The Moral Distress Risk Scale is composed of 7 factors and 30 items; it shows evidence of acceptable reliability and validity with a Cronbach’s α = 0.913, a total variance explained of 59%, a Kaiser–Meyer–Olkin = 0.896, and a significant Bartlett <0.001. Discussion: Concerns about moral distress should be beyond acute care settings, and a tool to help clarify critical points in other healthcare contexts may add value to moral distress speech. Conclusion: Psychometric results reveal that the Moral Distress Risk Scale can be applied in different healthcare contexts. (shrink)

This commentary examines the role of sustainability in the latest draft of the WHO pandemic accord, highlighting its notable absence from the official list of guiding principles despite being mentioned frequently throughout the text. It argues that sustainability should be explicitly acknowledged as a core principle and given a clear definition tailored to pandemic preparedness, and proposes defining sustainability as ensuring that immediate emergency responses don't compromise future pandemic preparedness and response capabilities. Including sustainability as a guiding principle would serve (...) two key purposes: validating the relevance of ethical principles in the accord's provisions and emphasizing the importance of long-term planning in pandemic preparedness. The commentary notes that while humans naturally discount future consequences, sustainable pandemic planning requires considering impacts beyond the next pandemic. It recommends coupling any reforms, such as intellectual property changes, with alternative innovation incentives to maintain a balanced approach to pandemic preparedness and response. (shrink)

Recent developments in genetic technologies have provided prospective parents with increasing opportunities to influence their future child’s phenotype. This study aimed to understand public attitudes towards gene-based technologies and services, with a particular focus on improving educational outcomes. We conducted a cross-sectional survey among a Singaporean population (n=1438), adapting a survey instrument previously used in the US context. Our results suggested that Singaporeans had a greater moral acceptance of, and willingness to use, genetic technologies and services compared with the US (...) population. Among the technologies examined, the use of polygenic embryo screening was considered more acceptable than gene editing. While these public attitudes show some support for the use of these technologies, further research and consultation among multiple stakeholder groups is necessary to determine whether such technology should be used and how it should be regulated. (shrink)

With the recent report of a live birth after use of Mitochondrial replacement therapy, sometimes called ‘Three-parent IVF’, the clinical application of the technique is fast becoming a reality. While the United Kingdom allows the procedure under regulatory scrutiny, it remains effectively outlawed in many other countries. We argue that such prohibitions may violate individuals’ procreative rights, grounded in individuals’ interest in genetic affinity. The interest in genetic affinity was recently endorsed by Singapore’s highest court, reflecting an emphasis on the (...) importance of biological ties found across the globe. We apply that reasoning to make the case for a right to ‘Three-parent IVF’. (shrink)

Volume 19, Issue 7, July 2019, Page 28-30.

In their response to ‘Public interest in health data research: laying out the conceptual groundwork’, Grewal and Newson critique us for inattention to the law and putting forward an impracticably broad conceptual understanding of public interest. While we agree more work is needed to generate a workable framework for Institutional Review Boards/Research Ethics Committees, we would contend that this should be grounded on a broad conception of public interest. This broadness facilitates regulatory agility, and is already reflected by some current (...) frameworks such as that found in the guidelines approved under Australia’s Privacy Act. It remains unclear which elements of our broad account Grewal and Newson would reject, or indeed where the substantive disagreement with our position lies. (shrink)

What Is a Person: Untapped Insights from Africa, a new book by Nancy Jecker and Caesar Atuire, offers an appealing and fresh perspective into ongoing debates surrounding personhood.1 The bioethics literature has, largely, drawn from Western/global North thought or (as arguably with the case of principlism) amalgamations of those traditions.2 3 This leaves substantial room for enriching current debates through insights from and engagement with understudied traditions. Just such an approach is taken by Jecker and Atuire, who in particular bring (...) African philosophical theories of personhood into dialogue with Western ones. Their critical appraisal ably identifies flaws with a range of theories across different traditions, and their book attempts to put forward a new theory of personhood that aims to draw from the best and discard the worst of those theories: Emergent Personhood. The book’s early sections indeed are very useful in terms of critical comparative analysis, resulting in insights such as the finding that both traditional African and traditional Western (or more specifically, Greco-Roman) thought actually overlap in terms of how personhood is conceptualised: extrinsic, earned, scalar and changing. Modern Western thought, though, eschewed those concepts first through the introduction of Christian moral equality, then Enlightenment systematic secular theories like deontology and utilitarianism that claim non-theological basis for such moral personhood. By contrast, the contemporary African theories Jecker and Atuire cite largely align with the traditional, relational accounts. So does their theory of Emergent Personhood succeed where African and Western thought have fallen short? While the theory’s contours are promising, several aspects are in need of further development. In this brief commentary, I will highlight three somewhat inter-related issues: (1) The criteria by which theories of personhood are evaluated are never given firm normative justification; (2) The normative force of Emergent Personhood’s relational foundations are not explicated; …. (shrink)

Some scientists suggest that it might be possible to reflect a portion of incoming sunlight back into space to reduce climate change and its impacts. Others argue that such solar radiation management (SRM) geoengineering is inherently incompatible with democracy. In this article, we reject this incompatibility argument. First, we counterargue that technologies such as SRM lack innate political characteristics and predetermined social effects, and that democracy need not be deliberative to serve as a standard for governance. We then rebut each (...) of the argument’s core claims, countering that (1) democratic institutions are sufficiently resilient to manage SRM, (2) opting out of governance decisions is not a fundamental democratic right, (3) SRM may not require an undue degree of technocracy, and (4) its implementation may not concentrate power and promote authoritarianism. Although we reject the incompatibility argument, we do not argue that SRM is necessarily, or even likely to be, democratic in practice. (shrink)

Theories in the usual sense, as characterized by a language and a set of theorems in that language ("statement view"), are related to theories in the structuralist sense, in turn characterized by a set of potential models and a subset thereof as models ("non-statement view", J. Sneed, W. Stegmüller). It is shown that reductions of theories in the structuralist sense (that is, functions on structures) give rise to so-called "representations" of theories in the statement sense and vice versa, where representations (...) are understood as functions that map sentences of one theory into another theory. It is argued that commensurability between theories should be based on functions on open formulas and open terms so that reducibility does not necessarily imply commensurability. This is in accordance with a central claim by Stegmüller on the compatibility of reducibility and incommensurability that has recently been challenged by D. Pearce. (shrink)