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)

This article argues that consent must be revocable. I present two arguments for this conclusion. On the argument from informed consent, irrevocable consent lacks validity because it cannot be sufficiently informed. On the argument from bodily integrity, irrevocable consent lacks validity because we do not have the authority to deny our future selves the ability to protect our bodily integrity. I explain why the argument from bodily integrity captures unique moral problems raised by irrevocable consent and illuminates an important but (...) undertheorized distinction between autonomy and bodily integrity. (shrink)

International research, sponsored by for-profit companies, is regularly criticised as unethical on the grounds that it exploits research subjects in developing countries. Many commentators agree that exploitation occurs when the benefits of cooperative activity are unfairly distributed between the parties. To determine whether international research is exploitative we therefore need an account of fair distribution. Procedural accounts of fair bargaining have been popular solutions to this problem, but I argue that they are insufficient to protect against exploitation. I argue instead (...) that a maximin principle of fair distribution provides a more compelling normative account of fairness in relationships characterised by extreme vulnerability and inequality of bargaining potential between the parties. A global tax on international research would provide a mechanism for implementing the maximin account of fair benefits. This model has the capacity to ensure fair benefits and thereby prevent exploitation in international research. (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)

For all its popularity as a psychological construct, willpower is irremediably polysemous. A more helpful construct is self-control, defined as the self-regulation of conflicting impulses. We show how the process model of self-control provides a principled framework for examining how undesirable impulses may be weakened and desirable impulses may be strengthened.

There is an alleged tension between undue inducement and exploitation in research trials. This paper considers claims that increasing the benefits to research subjects enrolled in international, externally-sponsored clinical trials should be avoided on the grounds that it may result in the undue inducement of research subjects. This article contributes to the debate about exploitation versus undue inducement by introducing an analysis of the available empirical research into research participants' motivations and the influence of payments on research subjects' behaviour and (...) risk assessment. Admittedly, the available research in this field is limited, but the research that has been conducted suggests that financial rewards do not distort research subjects' behaviour or blind them to the risks involved with research. Therefore, I conclude that research sponsors should prioritise the prevention of exploitation in international research by providing greater benefits to research participants. (edited). (shrink)

Recent research suggests that committing to corporate social responsibility (CSR) can induce moral licensing among employees, resulting in unethical behaviors. We extend this line of research and develop a theoretical framework to study how CSR influences managerial decision-making in crisis management. We test this theory in the context of product recall remediation. We examine under what circumstances CSR induces morally consistent or morally dubious recall remedial decisions and factors moderating this effect. We focus on two product recall remedial decisions that (...) differ in ambiguity—full versus partial compensation and proactive versus passive recall. We predict and show that a company’s strong prior CSR performance increases the likelihood of full compensation but decreases the likelihood of a proactive recall. This finding suggests that CSR can induce moral licensing behavior at the highest corporate level when a decision is morally difficult to diagnose. Further analysis reveals that consumer harm and institutional ownership moderate the relationship between CSR and these two remediation strategies. Together, our findings provide important insights into when CSR leads to moral licensing in crisis remediation and how the link can be mitigated, and thus shed light on when CSR yields consistent and meaningful ethical business decisions. (shrink)

This paper aims to show that to reduce the level of exploitation present in (some) international clinical trials, research sponsors must aim to provide both an ex-ante expected gain in utility and a fair ex-post distribution of benefits for research subjects. I suggest the following principles of fair risk distribution in international research as the basis of a normative definition of fairness: (a) Persons should not be forced (by circumstance) to gamble in order to achieve or protect basic goods; (b) (...) In cases where one party is gambling with basic goods and the other party is not, the distribution of benefits and burdens must be arranged so that they are of greatest benefit to the worst off; (c) In relationships where one party is gambling for basic goods and the other party is not, the party gambling for basic goods must be assured of some guaranteed benefits in addition to the chance of gaining some potential benefits.These principles are applied to the case of HIV international research. I conclude that the research (as described) is mutually advantageous but still exploitative because the distribution of surplus benefits is unfair. It is unfair because research subjects are gambling with and for basic goods but they are not assured of a fair ex-post distribution of benefits. Principles (b) and (c) are not satisfied. Research participants are not accorded enough guaranteed benefits to outweigh the risks they undertake. (shrink)

We previously reported a high level of information on the Austrian organ donation law in medical and non-medical students, patients and ICU nurses, whereby ICU nurses at University Hospital in Graz (n = 185) were very well informed and also had the most critical view of the Austrian organ donation law.

Hume's Moral Philosophy and Contemporary Psychology, edited by Philip A. Reed and Rico Vitz, is a collection of 14 essays intended to explore fruitful connections between David Hume's theory of the passions and ethics and contemporary experimental and cognitive psychology. Although recent moral philosophers have become interested in psychological discoveries in order to refine their normative approach to morality by means of a better empirical understanding of the workings of the mind, this trend has been typically developed by Aristotelian scholarship. (...) Hence, the purpose of this volume is to "fill a gap in the literature" by introducing Hume as a powerful interlocutor in the field of moral psychology, and... (shrink)

Community energy based on a mix of distributed technologies offers a serious alternative to the current energy system. The nature of community energy and the role that such initiatives might play in the general fabric of civic life is not, however, well understood. Community energy initiatives might involve only those citizens who prefer to be actively and continuously involved in intense, democratic debate. A more robust conceptualization of community energy might, on the other hand, be guided by Benjamin Barber’s notion (...) of “strong democracy,” in which community energy initiatives would draw upon a much broader citizen base, involving people from many walks of life and from quarters not generally presumed to be part of a sustained democratic process. The history of community energy is explored and a number of case studies are presented to illustrate the problems, prospects, and limitations of a socially and technologically decentralized energy system. (shrink)

We report evidence further supporting homology between proteins in the F1FO‐ATP synthetase and the bacterial flagellar motor (BFM). BFM proteins FliH, FliI, and FliJ have been hypothesized to be homologous to FO‐b + F1‐δ, F1‐α/β, and F1‐γ, with similar structure and interactions. We conduct a further test by constructing a gene order dataset, examining the order offliH,fliI, andfliJgenes across the phylogenetic breadth of flagellar and nonflagellar type 3 secretion systems, and comparing this to published surveys of gene order in the (...) F1FO‐ATP synthetase, its N‐ATPase relatives, and the bacterial/archaeal V‐ and A‐type ATPases. Strikingly, thefliHIJgene order was deeply conserved, with the few exceptions appearing derived, and exactly matching the widely conserved F‐ATPase gene orderatpFHAG, coding for subunits b‐δ‐α‐γ. The V/A‐type ATPases have a similar conserved gene order. Our results confirm homology between these systems, and suggest a rare case of synteny conserved over billions of years, predating the Last Universal Common Ancestor (LUCA). (shrink)

In his Kant on Laws, Eric Watkins presents an account of reason on which the principles of specification and continuity are regulative instructions to search for different kinds of the unconditioned. I suggest that we correct Watkins’ account in two ways. First, we need to complete Watkins’ claim to the plurality of the unconditioned: reason aims for three kinds of the unconditioned, associated with the lowest, next and highest concepts. Second, we need to look beyond reason’s search for the unconditioned (...) in order to properly understand the nature of the aim of reason. I argue that we construe reason’s aim as the systematic unity of cognition considered as a whole or, in Kant’s teleological terms, as the realization of an ‘idea’, or a ‘purposive unity’. (shrink)

it is common to praise the beauty of theories, the elegance of proofs, and the pleasing simplicity of explanations. We may admire, for example, the beauty of Einstein’s theory of general relativity, the simplicity of Darwin’s idea of natural selection, and the elegance of a geometrical proof of Pythagoras’s theorem. Aesthetic judgments such as these have much currency among scientists, and they are employed in the search for knowledge more broadly. But while the use of aesthetic judgments in science is (...) widespread, it is not uncontroversial.1 On one side, such judgments are often inspired by the Platonic vision that beauty and truth are ultimately one. As Henri Poincaré saw it, science is the “disinterested pursuit... (shrink)

The COVID-19 pandemic has brought to light significant failures and fragilities in our food, health, and market systems. Concomitantly, it has emphasized the urgent need for a critical re-evaluation of many of the policies and practices that have created the conditions in which viral pathogens can spread. However, there are many factors that are complicating this process; among others, the uncertain, rapidly evolving, and often poorly reported science surrounding the virus’ origins has contributed to a politically charged and often rancorous (...) public debate, which is concerning insofar as the proliferation of divisive discourse may hinder efforts to address complex and collective concerns in a mutually cooperative manner. In developing ethical and effective responses to the disproportionate risks associated with certain food production and consumption practices, we argue that the focus should be on mitigating such risks wherever they arise, instead of seeking to ascribe blame to specific countries or cultures. To this end, this article is an effort to inject some nuance into contemporary conversations about COVID-19 and its broader implications, particularly when it comes to trade in wildlife, public health, and food systems reform. If COVID-19 is to represent a turning point towards building a more equitable, sustainable, and resilient world for both humans and nonhuman animals alike, the kind of fractioning that is currently being exacerbated by the use of loaded terms such as “wet market” must be eschewed in favour of a greater recognition of our fundamental interconnectedness. (shrink)

Many clinical ethics support services do not involve patients. This is surprising because of the broad commitment to provide patient-centered healthcare. Clinical ethics support services are a component of the healthcare system and have an influence on patient care, and should therefore align with the regulatory and ethical requirements of patient-centered care, just process and cultural competence. First, in order to achieve good patient care, it is essential to involve patients in making their own healthcare decisions. Second, just ethical deliberation (...) requires that the deliberating parties have access to complete, accurate and unbiased information – this is best achieved through direct patient input. These arguments are especially compelling in the case of non-dominant cultural and ethnic groups. Here, we argue that when a clinician refers a case to a clinical ethics support services for consideration, and that case involves a conflict between the views or values of the clinician and the patient, the patient is entitled to, at a minimum: (a) be informed of the referral; (b) have the opportunity to speak directly to the clinical ethics support services prior to deliberation; (c) be provided with any opinion directly from the clinical ethics support services; and (d) have the opportunity to speak to a clinical ethics support services member after the deliberation. We use New Zealand as a case study to support and extrapolate the ethical principles and the minimum patient involvement requirements. We draw on our empirical research with senior doctors at a tertiary New Zealand hospital. Clinicians in our study indicated that they would feel bound by clinical ethics support service advice and that the clinical ethics support service has a significant impact on patient care in the case it reviews. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

Biotechnology might contribute to solving food safety and security challenges. However, gene technology has been under public scrutiny, linked to the framing of the media and public discourse. The study aims to investigate people’s perceptions and acceptance of food biotechnology with focus on transgenic genetic modification versus genome editing. An online experiment was conducted with participants from the United Kingdom and Switzerland. The participants were presented with the topic of food biotechnology and more specifically with experimentally varied vignettes on transgenic (...) and genetic modification and genome editing. The results suggest that participants from both countries express higher levels of acceptance for genome editing compared to transgenic genetic modification. The general and personal acceptance of these technologies depend largely on whether the participants believe the application is beneficial, how they perceive scientific uncertainty, and the country they reside in. Our findings suggest that future communication about gene technology should focus more on discussing trade-offs between using an agricultural technologies and tangible and relevant benefits, instead of a unidimensional focus on risk and safety. (shrink)

This paper describes the content and evolution of a fourth-year course for medical students on teaching pathographies of mental illness. (It is a follow-up to Nathan Carlin’s Pathographies of Mental Illness that appeared as an Element in the Bioethics and Neuroethics series published by Cambridge University Press.) The course originally centered on classic (and some contemporary) memoirs; however, responding to student evaluations, newer material now ensures more diversity, with material written by women and people of color, and describes the difference (...) that can make. (shrink)

One of the most contentious problems of contemporary philosophy revolves around the relation between idealism and realism in phenomenology. Husserl’s early students were the first to raise the question about the relation, noting a change of perspective from his Logical Investigations to his subsequent works, including The Idea of Phenomenology and Ideas Pertaining to a Pure Phenomenology and a Phenomenological Philosophy. Adolf Reinach was one of these students, and as Husserl’s assistant, he exercised a great influence on his own student (...) Edith Stein. (shrink)

There is increasing global pressure to ensure that pregnant women are responsibly and safely included in clinical research in order to improve the evidence base that underpins healthcare delivery during pregnancy. One supposed barrier to inclusion is the assumption that pregnant women will be reluctant to participate in research. There is however very little empirical research investigating the views of pregnant women. Their perspective on the benefits, burdens and risks of research is a crucial component to ensuring effective recruitment. The (...) Research In Pregnancy Ethics study set out to ascertain the views of pregnant women about research participation using an inductive thematic analysis. We conducted semi-structured interviews with 20 women who had participated in a double-blind randomised placebo controlled trial in Wellington while pregnant. Our results show that at least some pregnant women recognise the value and importance of research during pregnancy. The women we interviewed were deeply invested in the research process and outcomes. Key motivations for participating were altruism, playing a valuable civic role and the importance of research. The main perceived burdens related to inconvenience and time commitment. For some women, possible randomization to the placebo arm was regarded as a burden or disadvantage. (shrink)

The revision of the Council of International Organizations of Medical Sciences (CIOMS) International ethical guidelines for health‐related research (2016) heralds a paradigm shift from the ‘protectionist’ policies that emerged following historical research atrocities of the 20th century, towards a more nuanced and inclusive approach to research participation. Adopting this modified approach will enable countries to secure the benefits of research for individuals and for society as a whole, while at the same time minimizing the potential for exploitation and research‐related harms. (...) This article considers the potential impact of Guideline 16 of the CIOMS 2016 from a New Zealand perspective, with respect to research involving adults with impaired capacity and who are incapable of giving informed consent. While the CIOMS 2016 apply a ‘minimal risk’ threshold to guide research involving adults who lack capacity to consent, New Zealand law currently adopts a ‘best interests’ standard which significantly restricts the scope of permissible research that may be performed in this context. This article argues that the CIOMS 2016 should influence change to New Zealand’s legal framework for ethical review of research. CIOMS 2016 provides useful guidance for the necessary standards and processes to enable the responsible and ethical inclusion of adults with impaired capacity in research. (shrink)

Our study of queer women patients and their primary health care providers in Halifax, Nova Scotia, reveals a gap between providers’ theoretical knowledge of “cultural competency” and patients’ experience. Drawing on Patricia Benner’s Dreyfusian model of skill acquisition in nursing, we suggest that the dissonance between the anti-heteronormative principles expressed in interviews and the relative absence of skilled anti-heteronormative clinical practice can be understood as a failure to grasp the field of practice as a whole. Moving from “knowing-that” to “knowing-how” (...) in terms of anti-heteronormative clinical skills is not only a desirable epistemological trajectory, we argue, but also a way of understanding better and worse ethical practice. (shrink)

The present study examined how ethical beliefs and external factors affecting ethical beliefs are related to age and gender of business professionals. The results indicated that business professionals in the younger age group exhibited a lower standard of ethical beliefs. In the younger age groups, the females demonstrated a higher level of ethical beliefs, while in the older age group, the results suggested that the males had a slightly higher level of ethical beliefs. With regards to the influence of external (...) factors on ethical beliefs, the results yielded a significant interaction between age and gender. The younger age groups, males in particular, were more susceptible to external factors. People at home had the most influence on beliefs about ethics, while the individual''s supervisor had the least impact. The results were discussed in terms of theories of moral development. (shrink)