Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been (...) shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life. (shrink)

The Truth and Reconciliation Commission of Canada made it clear that understanding the historical, social, cultural, and political landscape that shapes the relationships between Indigenous peoples and social institutions, including the health care system, is crucial to achieving social justice. How to translate this recognition into more equitable health policy and practice remains a challenge. In particular, there is limited understanding of ways to respond to situations in which conventional practices mandated by the state and regulated by its legal apparatus (...) come into direct conflict with the values and autonomy of Indigenous individuals, communities, and nations. In this paper, we consider two cases of conflict between Indigenous and biomedical perspectives to clarify some of the competing values. We argue for the importance of person‐ and people‐centered approaches to health care. These value conflicts must be understood at multiple levels to clarify their personal, social, cultural, and political dimensions. Taking into account the divergence between epistemic cultures and communities allows us to understand the multiple narratives deployed in decision‐making processes in clinical, community, and juridical contexts. Recognizing the knowledge claims of Indigenous peoples in health care can help clinicians avoid reinforcing the divides created by the structural and institutional legacy of colonialism. This analysis also provides ways to adjudicate conflicts in health care decision‐making by disentangling cultural, political, medical, and pragmatic issues to allow for respectful dialogue. Insofar as the engagement with cultural pluralism in health care rights is conducted with reciprocal recognition, the medical community and Indigenous peoples can address together the difficult question of how to integrate different epistemic cultures in the health care system. (shrink)

Questions concerning moral problems caused by the lifesciences and concerning the adequate methods and instruments to solve these are timely and urgent; especially in the face of intense debates on the acceptability of research on human embryonic stem cells and preimplantation diagnostics, to name only two applications developed from research in the life-sciences. Unfortunately, the constant and accusing demand that life-scientists must behave morally does not give us a clue on how ethics may help in establishing guidelines for moral behaviour. (...) In this heated situation the foundation of ethics-committees seems to be the motto of the day. But instead of functioning as necessary and fruitful scientific advisory boards, these committees run the risk of being misused as a fashionable (and soon forgotten) weapon in the battle for political opinion-leadership. In the following article, the view is defended that ethics is a scientific enterprise and has an important role to play in political decision making on lifesciences issues. Content Type Journal Article Pages 29-31 Authors Felix Thiele, Bad Neuenahr-Ahrweiler GmbH, Wilhelmstrasse 56, D-53474 Bad Neuenahr-Ahrweiler, Germany Journal Human Reproduction & Genetic Ethics Online ISSN 2043-0469 Print ISSN 1028-7825 Journal Volume Volume 8 Journal Issue Volume 8, Number 2 / 2002. (shrink)

Looking at our knowledge of the risks associated with nanotechnology, one wonders to what degree should its products and applications be regulated? Do we need any governing body to regulate nanotechnology research and development? Do individuals have a right to know to make informed decisions through labelling mechanism? The question of regulation and responsibility in the interaction between science, technology and society is one of the most pressing issues. Risks and regulations regarding nanoscience and nanotechnology are mostly debated (...) amongst policy-makers and not amongst the nanoscientists, who actually produce the new science. Thus, the paper makes an attempt to contribute significantly to an increased body of knowledge regarding how scientists think and talk about science. Little has been documented about perceptions of nanotechnology regulation and responsibility in developing countries. Given the importance of perceptions in the genetically-modified foods debate, the way nanotechnology is perceived holds serious repercussions for the framing of its ethical, legal and social implications. Through a field-survey that records the opinions of leading Indian nanoscientists, the paper examines scientists' perceptions about nanotech-regulation. Such discussion is imperative to address technological risks and uncertainties. The paper further explores whether scientists have different views on what responsibility amounts to and under what conditions one is responsible. Though the study has considered Indian nanoscientists due to access issues, the research questions raised and addressed in this study are universal in nature. (shrink)

Those involved in end-of-life decision making must take into account both legal and ethical issues. This book starts with a critical reflection of ethical principles including ideas such as moral status, the value of life, acts and omissions, harm, autonomy, dignity and paternalism. It then explores the practical difficulties of regulating end-of-life decisions, focusing on patients, healthcare professionals, the wider community and issues surrounding 'slippery slope' arguments. By evaluating the available empirical evidence, the author identifies preferred ways to (...) regulate decisions and minimise abuses at the end of life, and outlines an ethical theory which can provide practical guidance for those engaged in end-of-life decisions"--Provided by publisher. (shrink)

Marine ecosystems are in serious troubles globally, largely due to the failures of fishery resources management. To restore and conserve fishery ecosystems, we need new and effective governance systems urgently. This research focuses on fisheries management in ancient China. We found that from 5,000 years ago till early modern era, Chinese ancestors had been constantly enthusiastic about sustainable utilization of fisheries resources and natural balance of fishery development. They developed numerous rigorous policies and regulations to guide people to (...) act on natural laws. Being detailed and scientific, the legal systems had gained gratifying enforcement, due to official efforts and folks’ voluntary participation in resource management. In-depth analyses show that people’s consciousness of ecological conservation was derived from the edification of kinds of ancient eco-ethical wisdom, such as totemism, nature worship, Zhou Yi , Taoism, Buddhism, Confucianism, Mohism, etc. All this Chinese classical wisdom have the same cores: “Nature and Man in One” spirit, frugality and “All things are equal” concept. The findings show that eco-ethical thinking is never inconsistent with social ethic systems, and it’s of great importance to give legal effect to usual ecological moral claims and eco-ethical requirements of the public in protecting the environment. The eco-ethical wisdom is efficient in assisting and urging people to fulfill humans’ obligation for nature. Finally, it’s believed that present world fisheries management will benefit a lot from all these ancient Chinese thoughts and practices. People are expected to make the most of the eco-ethical wisdom, strengthen fishery legislation and fully stimulate their voluntary participation in both marine fishery resources conservation and fishery cyclic economy. (shrink)

The central claim of this paper is that American states’ use of so-called “triggering conditions” to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts do not satisfy (...) the triggering conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations, and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation. (shrink)

The central claim of this paper is that American states’ use of so-called “triggering conditions” to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts do not satisfy (...) the triggering conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations, and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation. (shrink)

This article will explore some previously unrecognised legal and ethical issues associated with informal care-giving and criminal justice in the context of end of life decision-making. It was prompted by a recent case in Leeds Crown Court, which raises important issues for the people who care for their loved ones at home and for the criminal justice system more generally. Government figures estimate that over 5.2 million Britons are responsible for the care of relatives or loved ones. In (...) order to evaluate some of the ways in which they might find themselves exposed to unexpected criminal liability we have characterised this group as untrained carers who assume responsibility. (shrink)

Organisations increasingly use automated decision-making systems (ADMS) to inform decisions that affect humans and their environment. While the use of ADMS can improve the accuracy and efficiency of decision-making processes, it is also coupled with ethical challenges. Unfortunately, the governance mechanisms currently used to oversee human decision-making often fail when applied to ADMS. In previous work, we proposed that ethics-based auditing (EBA)—that is, a structured process by which ADMS are assessed for consistency with relevant principles or (...) norms—can (a) help organisations verify claims about their ADMS and (b) provide decision-subjects with justifications for the outputs produced by ADMS. In this article, we outline the conditions under which EBA procedures can be feasible and effective in practice. First, we argue that EBA is best understood as a ‘soft’ yet ‘formal’ governance mechanism. This implies that the main responsibility of auditors should be to spark ethical deliberation at key intervention points throughout the software development process and ensure that there is sufficient documentation to respond to potential inquiries. Second, we frame AMDS as parts of larger sociotechnical systems to demonstrate that to be feasible and effective, EBA procedures must link to intervention points that span all levels of organisational governance and all phases of the software lifecycle. The main function of EBA should, therefore, be to inform, formalise, assess, and interlink existing governance structures. Finally, we discuss the policy implications of our findings. To support the emergence of feasible and effective EBA procedures, policymakers and regulators could provide standardised reporting formats, facilitate knowledge exchange, provide guidance on how to resolve normative tensions, and create an independent body to oversee EBA of ADMS. (shrink)

Soft regulation has increased its importance in science and technology governance. Despite such indisputable significance, the literature on technology policy and regulation so far seems to have dedicated only a limited attention to a systematic understanding of the factors affecting compliance with these soft rules. This article addresses this limitation. By way of a literature scoping exercise, we propose a taxonomy of the mechanisms affecting compliance with soft regulation. We subsequently apply the taxonomy as a guide to examine the opinions (...) of a small group of scientists and company managers in the Italian nanotechnology sector. The case study does not assess compliance in a direct way, i.e., observing how organizations comply with regulation, but it explores the opinions on what the factors affecting compliance are. (shrink)

Purpose: Despite various comparative studies in the field of cultural heritage protection in the world, there is still a significant lack of comparative research on policies related to the legal system of countries' governance. The purpose of this study is to address the comparative policies in Iran and Italy, with a particular focus on the results of the executive experiences of two different types of policies in the cities of Oroumieh (North-West of Iran) and Turin (in North-West (...) of Italy). Design/methodology/approach: Utilising the comparative, analytical, bibliographic and descriptive historical research methodology, which is based on the study of the local, national and international comprehensive review of regulations and policy-making of cultural heritage preservation policies in Iran and Italy. In this research, the related documents in three languages (Persian, Italian and English) have been examined to compare profoundly and comprehensively the policies and regulations adopted in these two countries to be able to analyze the national and transnational regulations and local policies in the cultural heritage sector. Findings: In addition to many cultural similarities and numerous commonalities, especially in the multiplicity of urban cultural heritage in historical centers, the results suggest that the legislation structure in Iran is much more centralized than in Italy. Also, the findings suggest that Italy focuses on aligning its previously centralized national legislative system in line with contemporary European heritage and preservation policies. Originality/value: The paper outlines how to use historical and cultural similarities through comparative study to benefit the experiences of two historical countries in urban heritage conservation and policy-making part despite their differences. (shrink)

Community research by anthropologists and sociologists details the effects that centralization of decision making has on local communities. As governance and regulation move toward global scales, conservation policy has devolved to the local levels, creating tensions in resource management and protection. Centralization without local participation can place communities at risk by eroding the environmental knowledge and decision making capacity of local people. Environmental problems such as water quality impairments require perception, interpretation, and ability to act locally. Through a (...) presentation of findings from farm communities in the Sugar Creek Watershed (Northeast Ohio, USA), this paper examines tradition, social scale, and land use among Anabaptist and other farm households, and refocuses on-farm conversation away from conventional individual metric-based studies and toward a systems approach. This new approach frames conservation behavior in a socio-cultural system that is influenced by tradition in on-farm decision making. Data from four subwatersheds are used to probe the effects of these variables on conservation adoption, explore the optimal farm size concept, and discus the roles of tradition and local and non-local knowledge in sustainability. (shrink)

Introduction Scholars have debated how to define coercion and undue influence, but how institutional review boards (IRBs) view and make decisions about these issues in actual cases has not been explored. Methods I contacted the leadership of 60 US IRBs (every fourth one in the list of the top 240 institutions by National Institutes of Health funding), and interviewed 39 IRB leaders or administrators from 34 of these institutions (response rate=55%), and 7 members. Results IRBs wrestled with defining of (...) ‘coercion’ and ‘undue inducement’, most notably in deciding about participant compensation. IRBs often use these terms synonymously and define undue inducement in varying ways, often wrestling with these issues, relying on ‘gut feelings’, and seeking compromises. Ambiguities arose, partly reflecting underlying tensions: whether subjects should ‘get paid’ versus ‘volunteer’ (ie, whether subjects should be motivated by compensation vs altruism), and whether subjects should be paid differently based on income, given possible resultant selection bias. Lack of consistent standards emerged between and even on single IRBs. Questions arose concerning certain aspects and types of studies; for example, how to view and weigh providing free care in research, whether and how recruitment flyers should mention compensation, and how to avoid coercion in paediatric, developing world, or students research. Conclusions These data, the first to probe qualitatively how IRBs view and approach questions about coercion, undue influence and participant compensation, and to examine how IRBs have reviewed actual cases, reveal several critical ambiguities and dilemmas, and have vital implications for future practice, education, policy and research. (shrink)

Technology regulation is one of the most important public policy issues facing society and governments at the present time, and further clarity could improve decision making in this complex and challenging area. Since the rise of the internet in the late 1990s, a number of approaches to technology regulation have been proposed, prompted by the associated changes in society, business and law that this development brought with it. However, over the past decade, the impact of technology has been (...) profound and the associated issues for government have extremely challenging, ranging across cyber security, artificial intelligence, and many other areas. To that end, this article introduces a Theory of Institutional Technology Actors and Norms (TITAN), a normatively informed and institutionally-based account of technology regulation. It focuses on the moral and legal (including regulatory) rights and responsibilities of the relevant actors and seeks to inform the development of regulation that is both fit for purpose, rights compliant and fair for all concerned. The account incorporates the perspectives of four key categories of groups in society: producers of technology, users of technology, government regulators, and normative policy shapers. (shrink)

The commercial introduction of genetically modified organisms (GMOs) has revealed a broad range of views among scientists and other stakeholders on perspectives of genetic engineering (GE) and if and how GMOs should be regulated. Within this controversy, the precautionary principle has become a contentious issue with high support from skeptical groups but resisted by GMO advocates. How to handle lack of scientific understanding and scientific disagreement are core issues within these debates. This article examines some of the key issues affecting (...) precaution as a legal standard and as an approach to the use of science in decision-making processes. It is pointed out that there is a need for reflection over the level of scientific evidence required for applying the precautionary principle as well as who should have the burden of proof when there are uncertainties. Further, an awareness of the broader scientific uncertainties found in GMO risk assessment implies that a precautionary approach must be elaborated: both for acknowledging uncertainties and for identification of scientific responses. Since precaution is an important issue within the sustainable development framework, it is suggested that sustainability can provide a normative standard that can help to reveal the influence and negotiate the importance of the various forms of uncertainty. Wise management of uncertainties and inclusion of normative aspects in risk assessment and management may help to ensure sustainable and socially robust GMO innovations at present and in the future. (shrink)

Many policy decisions take input from collections of scientific models. Such decisions face significant and often poorly understood uncertainty. We rework the so-called confidence approach to tackle decision-making under severe uncertainty with multiple models, and we illustrate the approach with a case study: insurance pricing using hurricane models. The confidence approach has important consequences for this case and offers a powerful framework for a wide class of problems. We end by discussing different ways in which model (...) ensembles can feed information into the approach, appropriate to different collections of models. (shrink)

Responsible Research and Innovation (RRI) has emerged as a science policy framework that attempts to import broad social values into technological innovation processes whilst supporting institutional decision-making under conditions of uncertainty and ambiguity. When looking at RRI from a ‘principled’ perspective, we consider responsibility and justice to be important cornerstones of the framework. The main aim of this article is to suggest a method of realising these principles through the application of a limited Rawlsian Difference Principle in the (...) distribution of public funds for research and innovation. There are reasons why the world's combined innovative capacity has spewed forth iPhones and space shuttles but not yet managed to produce clean energy or universal access to clean water. (Stilgoe 2013, xii) I derive great optimism from empathy's evolutionary antiquity. It makes it a robust trait that will develop in virtually every human being so that society can count on it and try to foster and grow it. It is a human universal. (de Waal 2009, 209) Responsible Research and Innovation (RRI) has emerged as a science policy framework that attempts to import broad social values into technological innovation processes whilst supporting institutional decision-making under conditions of uncertainty and ambiguity. In this respect, RRI re-focuses technological governance from standard debates on risks to discussions about the ethical stewardship of innovation. This is a radical step in Science & Technology (S&T) policy as it lifts the non-quantifiable concept of values into the driving seat of decision-making. The focus of innovation then goes beyond product considerations to include the processes and – importantly – the purposes of innovation (Owen et al. 2013, 34). Shared public values are seen as the cornerstone of the new RRI framework, while market mechanisms and risk-based regulations are of a secondary order. What are the values that could drive RRI? There are different approaches to the identification of public values. They can be located in democratically agreed processes and commitments (such as European Union treaties and policy statements) or they can be developed organically via public engagement processes. Both approaches have advantages and disadvantages. For instance, although constitutional values can be regarded as democratically legitimate, their application to specific technological fields can be difficult or ambiguous (Schroeder and Rerimassie 2015). On the other hand, public engagement can accurately reflect stakeholder values but is not necessarily free from bias and lobbyist agenda setting. We argue that if RRI is to be more successful in resolving policy dilemmas arising from poorly described and uncertain technological impacts, basic universal principles need to be evoked and applied. When looking at RRI from a ‘principled’ perspective, we consider responsibility and justice to be important cornerstones of the framework. One could describe them in the following manner: Research and innovation should be conducted responsibly. Publicly funded research and innovation should be focused fairly on socially beneficial targets. Research and innovation should promote and not hinder social justice. The main aim of this article is to suggest a method of realising these principles through the application of a limited Rawlsian Difference Principle in the distribution of public funds for research and innovation. This paper is in three parts. The first part discusses the above principles and introduces the Rawlsian Difference Principle. The second part identifies how RRI is currently applied by public funding bodies. The third part discusses the operationalisation of the Rawlsian Difference Principle in responsible funding decisions. (shrink)

Global health emergencies such as the COVID-19 pandemic are contexts in which it is critical to draw upon learning from prior research and to conduct novel research to inform real-time decision-making and pandemic responses. While research is vitally important, however, emergencies are radically non-ideal contexts for its conduct, due to exceptional uncertainty, urgency, disruption, health needs, and strain on existing health systems, amongst other challenges. This generates novel ethical challenges and a broader conception of research ethics is necessary (...) to effectively address the complexity of pandemic research contexts. Going beyond traditional approaches to research ethics centring on the design of specific studies, this broader conception requires consideration of fundamental questions relating to the exercise of power and influence throughout research pathways, and a broader attention to both salient ethical issues, and the ethical responsibilities of stakeholders. These include important questions about responsibilities to gather evidence and generate knowledge systematically during emergencies, to implement policy responses in ways that are amenable to evaluation, and even potential moral obligations to participate in research. In situations of heightened uncertainty, additional questions arise about what constitutes sufficient evidence to justify the development and implementation of policy responses, and the responsibilities of scientific and social science researchers involved in policy-making processes. The four cases in this chapter prompt reflection on evolving and at times competing values and responsibilities of policy-makers, regulators, health authorities and researchers during the design and conduct of research, and proposed early implementation of research findings. These cases highlight issues arising when conducting research of national importance in a pandemic, where researchers are required to liaise with authorities responsible for pandemic responses and address complex ethical issues, including protecting the interests of participants and publics when tensions arise between prioritising the completion of research and accelerating the rollout of novel health interventions. This chapter invites reflection on the practical ethical implications of commitments to undertake research during emergencies, including the nature and scope of the relevant responsibilities of a range of stakeholders. (shrink)

Legal scholarship emphasizes generalizing across places, time periods, and sources of law. Microcomputers can facilitate well-organized information retrieval systems, inductive statistical analysis, and prescriptive analysis working with goals to be achieved and available alternatives. Super-optimizing can help resolve legal disputes, dilemmas, and policy controversies whereby all sides, viewpoints, and ideological positions can come out ahead of their best initial expectations simultaneously. This book discusses these three important subjects by generating relevant principles based on developmental law, legal policy analysis, law (...) teaching, and the judicial process. (shrink)

Medical doctors are commissioned by the migration authorities and/or border police to assist in decision making about asylum seeker’s requests for residency permits in Sweden. They are asked to: (i) assess the formal written medical opinions made by physicians in support of asylum or humanitarian narratives in the asylum process and/or (ii) to make medical assessments of persons considered for deportation. This arrangement raises questions such as: How is the decision making process carried out? How is medical knowledge (...) used, and who ought to make decisions about medical evidence in the asylum process? Does this approach effect public health overall? There are longstanding concerns that medical assessments to certify whether a person is fit for transport or not, can have a direct, negative impact on persons in need of care and protection. A separate structure of doctors commissioned by the immigration authority seems to raise professional tensions, politicizes medical constructs and contributes to moral disengagement. Empirical data are used to illustrate this discussion with reference to medical issues, medical ethics, public health and legal discourses. I then reflect on key value conflicts using public health ethics theory and conclude with implications for public health ethic theory, policy and practice. (shrink)

The article focuses on some discursive defects that influence on decision-making around issues of science and technology (technoscience). Particularly, the nature and use of the linguistic phenomenon known as bullshit are analysed, and the results of this analysis are placed into the general context of the controversy about climate change. The conclusion emphasizes the relevance of avoiding confusions and humbug in the information available to the public and linked to decisions in the realm of science policy or regulation.

Earp, Lewis, and Hart make a comprehensive and compelling argument for ending the “war on drugs,” highlighting the importance of both ending the criminalization of people who use drugs, and...

Drug regulation is fraught with inductive risk. Regulators must make a prediction about whether or not an experimental pharmaceutical will be effective and relatively safe when used by typical patients, and such predictions are based on a complex, indeterminate, and incomplete evidential basis. Such inductive risk has important practical consequences. If regulators reject an experimental drug when it in fact has a favourable benefit/harm profile, then a valuable intervention is denied to the public and a company’s material interests are (...) needlessly thwarted. Conversely, if regulators approve an experimental drug when it in fact has an unfavourable benefit/harm profile, then resources are wasted, people are needlessly harmed, and other potentially more effective treatments are underutilized. Given that such regulatory decisions have these practical consequences, non-epistemic values about the relative importance of these consequences impact the way such regulatory decisions are made (similar to the analysis of laboratory studies on the toxic effects of dioxins presented in Douglas [2000]). To balance the competing demands of the pertinent non-epistemic values, regulators must perform what I call an “inductive risk calculus.” At least in the American context this inductive risk calculus is not well-managed. (shrink)

The enforcement of the alkali acts by the chief inspectors Robert Angus Smith and Alfred Evans Fletcher indicates how scientific ideals of neutrality and impartiality were placed under strain by their state‐sanctioned role as arbitrators between environmental and industrial interests. Previously unused or unexploited sources reveal the precise ways in which they sought to resolve the conflicts between ‘muck and brass' intrinsic to environmental regulation and illustrate the value‐laden and discretionary implementation of scientific public policy. Through an analysis of the (...) ethical considerations and decision‐making strategies of the first chief alkali inspectors this study highlights the social negotiation of regulatory science and shows the extent to which the cultural values of actors can shape the implementation of technical policy. (shrink)

The article substantiates that science, thanks to the latest media in the dissemination of scientific communication (especially computer word processing, big data accumulation, mega-science installations, the latest international networking platforms and collaborations), has gone beyond all institutional, organizational, regional, national and partly disciplinary borders. Science as a supranational communication system has reached a complexity that is incompatible with the standards for evaluating scientific work and scientific achievements, which are traditionally carried out in the form of scientific committees, individual examinations and (...) other collegial forms of scientific communication. The collegiality of making the most important decisions regarding the examination of the scientific product itself, the thematic agenda, professional competencies and the resulting distribution of remuneration, reputation, ranks, degrees, grants has exhausted its capabilities to a certain extent. As a result, science turns out to be opaque both for the regulator, who is trying to exercise control over scientific institutions, and for science itself, which in the form of scientific self-government and philosophical reflection of science carries out the function of self-observation and self-description. A working hypothesis is proposed, which states that in response to this crisis of collegiality, reflection and control, new media of communicative success and new organizational forms of scientific communication crystallize in science, which can restore the ability of a scientific system to process its internal and external complexity. These media are represented by a new, social-networked form of scientific expertise and partly scientific work, which will be able to compensate for the lack of self-reflection, both at the organizational level of research institutes and at the level of global control over science as a whole. (shrink)

Laboratory safety regulations have been traditionally viewed by its learners and practitioners as a matter of law and policy, which simply requires compliance. A compliance mindset tends be passive and dissociates individuals (or even institutions) from the important reasons and principles underlying the safety rules and regulations, leading to disinterestedness and disdain. I posit that laboratory safety regulations would need to be crafted, presented and taught in a manner that is coupled to, or at least with (...) an emphasis on, research ethics. Learners and practitioners of laboratory safety must be led to fully grasp the ethical underpinnings of the rules and regulations, however perceivably cumbersome or inconvenient the latter may seem. In extended definitions beyond the classical fabrication, falsification and plagiarism, laboratory safety violation (LSV) should indeed be considered a form of research misconduct (RM). A full appreciation of the ethical principles underlying laboratory safety regulations would intuitively make LSVs morally impermissible, and as such defiance would be morally unacceptable. Importantly, LSVs framed as moral transgressions would be equally applied to all perpetrators in terms of culpability regardless of one’s endowment and power status. LSV perpetrators should thus also be punishable in accordance with the federal or institutional laws or bylaws of research ethics and integrity. Pedagogical and content modifications to laboratory safety education to adequately reflect a research ethics emphasis, as well as promotion of epistemic acuity in this regard, would be desirable. (shrink)

To practise ‘fairly and justly’ a clinician must balance the needs of both the many and the few: the individual patient in front of them, and the many unseen patients in the waiting room, and in the county. They must consider the immediate clinical needs of those in the present, and how their actions will impact on future patients. The good medical practice guidance ‘Make the care of your patient your first concern’ provides no guidance on how doctors should act (...) when they care for multiple patients with conflicting needs. Moreover, conflicting needs extend far past simply those between different patients. At an organisational level, financial obligations must be balanced with clinical ones; the system must support those who work within it in a variety of roles; and, finally, in order for a healthcare service to be sustainable, the demands of current and future generations must be balanced.The central problem, we propose, is that there is no shared philosophical framework on which the provision of care or the development of health policy is based, nor is there a practical, fair and transparent process to ensure that the service is equipped to deal justly with new challenges as they emerge. Many philosophers have grappled with constructing a set of principles which would lead to a ‘good’ society which is just to different users; prominent among them is Rawls.Four important principles can be derived using a Rawlsian approach: equity of access, distributive justice, sustainability and openness. However, Rawls’ approach is sometimes considered too abstract to be applied readily to policymaking; it does not provide clear guidance for how individuals working within existing institutions can enact the principles of justice. We therefore combine the principles derived from Rawls with Scanlonian contractualism: by demanding that decisions are made in a way which cannot be ‘reasonably rejected’ by different stakeholders, we ensure that conflicting needs are considered robustly.We demonstrate how embedding this framework would ensure just policies and fair practice. We illustrate this by using examples of how it would help prevent injustice among different socioeconomic groups, prevent intergenerational injustice and prevent injustice in a crisis, for example, as we respond to new challenges such as COVID-19.Attempts to help individual doctors practise fairly and justly throughout their professional lives are best focused at an institutional or systemic level. We propose a practical framework: combining Scanlonian contractualism with a Rawlsian approach. Adopting this framework would equip the workforce and population to contribute to fair policymaking, and would ultimately result in a healthcare system whose practice and policies—at their core—were just. (shrink)

The function and legitimacy of values in decision making is a critically important issue in the contemporary analysis of science. It is particularly relevant for some of the more application-oriented areas of science, specifically decision-oriented science in the field of regulation of technological risks. Our main objective in this paper is to assess the diversity of roles that non-cognitive values related to decision making can adopt in the kinds of scientific activity that underlie risk regulation. We start (...) out, first, by analyzing the issue of values with the help of a framework taken from the wider philosophical debate on science and values. Second, we study the principal conceptualizations used by scholars who have applied them to numerous case studies. Third, we appraise the links between those conceptualizations and learning processes in decision-oriented science. In this, we recur to the concept of methodological learning, i.e., learning about the best methodologies for generating knowledge that is useful for science-based regulatory decisions. The main result of our analysis is that non-cognitive values can contribute to methodological improvements in science in three principal ways: as basis for critical analysis, for contextualizing methodologies, and for establishing the burden of proof. (shrink)

Genetically engineered animals that are meant for release in the wild could significantly impact ecosystems given the interwoven or entangled existence of species. Therefore, among other things, it is all too important that regulatory agencies conduct entity appropriate, rigorous risk assessments that can be used for informed decision-making at the local, national and global levels about the release of those animals in the wild. In the United States, certain GE animals that are intended for release in the wild (...) may be regulated as new animal drugs by the Food and Drug Administration. This paper argues that the decision to treat them as new animal drugs is attributable to the influence of neoliberalism on the US biotechnology regulatory policy framework. The case is made that there should be public democratic deliberations and decision-making about the values and concerns that should guide the nation’s biotechnology regulatory policy paradigm, including the risk assessment process for GE animals meant for release in the wild. -/- . (shrink)

Shifting laws and regulations increasingly displace the centrality of women's health concerns in the provision of abortion services. This is exemplified by the growing presence of deceptive Crisis Pregnancy Centers alongside new informed consent laws designed to dissuade women from seeking abortions. Litigation on informed consent is further complicated in the clinical context due to the increased mobilization of facts – such as the gestational age or sonogram of the fetus – delivered with the intent to dissuade women from (...) accessing abortion. In other words, factual information utilized for ideological purpose. To preserve a woman's autonomy and decision-making capacity, there must be a concerted effort on the part of legislators and courts to place a woman's health at the center of abortion law and policy. (shrink)

Much of the most substantive and in‐depth experience with formal cost‐benefit analysis in the public policy realm has occurred in the context of federal environmental regulation in the United States. This experience has many important lessons to teach in the realm of synthetic biology. Indeed, many of the dangers and pitfalls that arise when decision‐makers use formal CBA to evaluate environmental regulation seem likely to arise in the synthetic biology context as well, sometimes in particularly troubling forms. Unfortunately, while (...) in many instances these concerns may well point toward a rejection of formal CBA for synthetic biology, the experience from environmental regulation turns out to be far less helpful in identifying alternative decision‐making tools. Because the decisions that arise in the synthetic biology context have a fundamentally different structure from decisions about environmental regulation, the most useful alternatives from that context do not map easily onto this new context.It may well be generally true that in the search for decision‐making tools, we should not be looking for a single silver bullet that will work in all public policy realms. Perhaps, instead, different kinds of decision‐making call for different tools. This may be true even within the realm of synthetic biology. I am not entirely sure what the “right” tool is for synthetic biology applications, or even whether a “right” tool exists. But at the end of this essay, I offer a few tentative thoughts about why scenario analysis—a strategic planning tool first developed in the context of military planning following World War II—might be one alternative worth considering. (shrink)

Governments can try to counter obesity through preventive regulations such as sugar taxes, which appear to raise costs or reduce options for consumers. Would the regulations improve the welfare of adult consumers? The regulations might improve choice sets through a mechanism such as reformulation, but the scope for such improvement is limited. Otherwise, a paternalistic argument must be made that preventive regulations would improve welfare despite reducing choice. This paper connects arguments about obesity, health, and choice (...) to a philosophically plausible view of welfare. On the negative side, two errors to avoid are failing to see the limited value of health and thinking that findings of irrationality would alone settle arguments about welfare. On the positive side, preventive regulations could make people better-off if welfare is the satisfaction of preferences and if preventive regulations could better satisfy preferences by overcoming certain forms of irrationality. The leading evidence is from widespread attempts to lose weight. However, at least for the United States, most adults are not trying to lose weight, and that casts doubt on whether they would benefit from preventive regulations. If they would not, that seems a strong albeit not decisive reason against these regulations. (shrink)

Stem cell tourism is a small but growing part of the thriving global medical tourism marketplace. Much stem cell research remains at the experimental stage, with clinical trials still uncommon. However, there are over 700 clinics estimated to be operating in mostly developing countries – from Costa Rica and Argentina to China, India and Russia – that have lured many patients, mostly from industrialized countries, driven by desperation and hope, which in turn continue to fuel the growth of such tourism.While (...) much research has focused on such dimensions as the promotions that allow such businesses to make their services known, media coverage, some patient research, and regulatory conditions for developing country clinics, little attention has been paid to the non-affected members of the general population, the future potential users of such services. This empirical study based on five focus group discussions with a diverse group of healthy adults in a Canadian city, explored participant views of patients who use stem cell tourism services, the likelihood they would avail themselves of such services if they were to suffer similar illnesses, and the conditions under which they might do so, and the impact that admonitions and advice from international expert bodies might have on their decisions. Our findings suggest that these healthy adults are sympathetic to the drivers of hope and desperation, and, despite cautions about research limitations, may seek such treatments themselves under similar conditions. These findings are discussed in the context of the policy and ethical issues raised by this form of medical tourism. (shrink)

Stem cell tourism is a small but growing part of the thriving global medical tourism marketplace. Much stem cell research remains at the experimental stage, with clinical trials still uncommon. However, there are over 700 clinics estimated to be operating in mostly developing countries – from Costa Rica and Argentina to China, India and Russia – that have lured many patients, mostly from industrialized countries, driven by desperation and hope, which in turn continue to fuel the growth of such tourism.While (...) much research has focused on such dimensions as the promotions that allow such businesses to make their services known, media coverage, some patient research, and regulatory conditions for developing country clinics, little attention has been paid to the non‐affected members of the general population, the future potential users of such services. This empirical study based on five focus group discussions with a diverse group of healthy adults in a Canadian city, explored participant views of patients who use stem cell tourism services, the likelihood they would avail themselves of such services if they were to suffer similar illnesses, and the conditions under which they might do so, and the impact that admonitions and advice from international expert bodies might have on their decisions. Our findings suggest that these healthy adults are sympathetic to the drivers of hope and desperation, and, despite cautions about research limitations, may seek such treatments themselves under similar conditions. These findings are discussed in the context of the policy and ethical issues raised by this form of medical tourism. (shrink)

The disability rights movement (DRM) has often been closely associated with the liberal values of individual choice and independence, or the ‘ethics of agency’, where enhancing the capacity to make autonomous decisions in various policy and practice-based contexts is said to facilitate disabled people's well-being. Nevertheless, other liberal values are derived from what will be termed here the ‘ethics of self-acceptance’. The latter is more disguised in liberalism and the DRM, as rather than emphasising the capacity to make autonomous (...) decisions, self-acceptance focuses on the positive acceptance of individual limitations, but again to enhance well-being. The further argument is that while the ethics of agency and self-acceptance often logically cohere and overlap, through promoting the values of self-respect and relational autonomy, dilemmas arise from our asymmetrical, or uneven, dispositions towards time, and present and future lives and experiences. For example, positively accepting individual limitations allows for a present-oriented immersion in ‘the moment’, but which often requires some suspension of future-oriented goals and aspirations. Understanding some of the implications of this asymmetry, and the dilemmas arising from it, provide important insights concerning approaches to physical and intellectual impairments and the subsequent debates within the DRM, social policy and welfare practice. (shrink)

The controversy surrounding the use of hydroxychloroquine, an antimalarial drug, for COVID-19 has raised numerous ethical and policy problems. Since the suggestion that HCQ has potential for COVID-19, there have been varying responses from clinicians and healthcare institutions, ranging from adoption of protocols using HCQ for routine care to the conduct of randomised controlled trials to an effective system-wide prohibition on its use for COVID-19. In this article, we argue that the concept of ‘disease public profile’ has become a prominent, (...) if not the sole, determinant in decision-making across various healthcare responses to the pandemic. In the case of COVID-19, the disease’s public profile is based on clinical and non-clinical factors that include contagiousness, clinical presentation and media coverage. In particular, we briefly examine the dangers of a heightened public profile in magnifying the inequality of diseases and undermining three key ethical concepts, namely evidence-based practice, sustainable allocation and meaningful consent. (shrink)

Since approval of the EU General Data Protection Regulation (GDPR) in 2016, it has been widely and repeatedly claimed that the GDPR will legally mandate a ‘right to explanation’ of all decisions made by automated or artificially intelligent algorithmic systems. This right to explanation is viewed as an ideal mechanism to enhance the accountability and transparency of automated decision-making. However, there are several reasons to doubt both the legal existence and the feasibility of such a right. In contrast (...) to the right to explanation of specific automated decisions claimed elsewhere, the GDPR only mandates that data subjects receive meaningful, but properly limited, information (Articles 13-15) about the logic involved, as well as the significance and the envisaged consequences of automated decision-making systems, what we term a ‘right to be informed’. Further, the ambiguity and limited scope of the ‘right not to be subject to automated decision-making’ contained in Article 22 (from which the alleged ‘right to explanation’ stems) raises questions over the protection actually afforded to data subjects. These problems show that the GDPR lacks precise language as well as explicit and well-defined rights and safeguards against automated decision-making, and therefore runs the risk of being toothless. We propose a number of legislative and policy steps that, if taken, may improve the transparency and accountability of automated decision-making when the GDPR comes into force in 2018. (shrink)

La cultura del agua debe ser vinculada de forma especial a las manifestaciones del patrimonio cultural intangible de los pueblos, como las tradiciones orales o escritas, la simbología o los rituales, que conforman lo que llamamos los Imaginarios del Agua. Estos deben ser analizados y deconstruidos a la luz de los nuevos paradigmas, como la hermenéutica y la ecocrítica. De este modo, la mitografía ayuda a perfilar el significado profundo de la cultura del agua ante las nuevas demandas medioambientales, educativas (...) y culturales del siglo XXI, en un contexto donde el agua ya no es solo un recurso estratégico, sino un bien cultural ligado al desarrollo local y a las políticas de sostenibilidad. Por ello, al conocer las tradiciones ancestrales y los imaginarios en torno al agua, y al sensibilizar a los alumnos con los valores plurales de estas manifestaciones culturales --que siempre van encaminados al respeto y al conocimiento del patrimonio natural y cultural--, contribuimos de forma decisiva a la gobernanza del agua y a la gestión sostenible y responsable de los recursos hídricos, pues sin duda el principal problema de la sostenibilidad será la educación de los ciudadanos. Water culture must be linked in a special way to expressions of intangible cultural heritage of peoples, such as oral or written traditions, symbols or rituals that make up what we call the imaginary water. They must be analyzed and deconstructed in the light of the new paradigms, such as hermeneutics and the ecocriticism. Thus, mythography helps shape the profound meaning of the culture of the water at the new environmental, educational and cultural demands of the 21st century, in a context where the water is not only a strategic resource but a cultural property linked to local development and sustainability policies. Therefore, to know the ancestral traditions and imaginaries in connection to water, and to educate students with the plural values of these cultural manifestations, --which always aimed to respect and knowledge of the natural and cultural heritage-- we contribute decisively to the governance of the water and the sustainable and responsible management of water resources then no doubt the main problem of sustainability will be the education of citizens. (shrink)

Background: Concern has been growing in the academic literature and popular media about the licensing, introduction and adoption of surgical devices before full effectiveness and safety evidence is available to inform clinical practice. Our research will seek empirical survey evidence about the roles, responsibilities, and information and policy needs of the key stakeholders in the introduction into clinical practice of new surgical devices for pelvic floor surgery, in terms of the underlying ethical principals involved in the economic decision-making process, (...) using the example of pelvic floor procedures.Methods/DesignOur study involves three linked case studies using, as examples, selected pelvic floor surgery devices representing Health Canada device safety risk classes: low, medium and high risk. Data collection will focus on stakeholder roles and responsibilities, information and policy needs, and perceptions of those of other key stakeholders, in seeking and using evidence about new surgical devices when licensing and adopting them into practice. For each class of device, interviews will be used to seek the opinions of stakeholders. The following stakeholders and ethical and economic principles provide the theoretical framework for the study:Stakeholders - federal regulatory body, device manufacturers, clinicians, patients, health care institutions, provincial health departments, and professional societies. Clinical settings in two centres (in different provinces) will be included.Ethics - beneficence, non-maleficence, autonomy, justice.Economics - scarcity of resources, choices, opportunity costs.For each class of device, responses will be analysed to compare and contrast between stakeholders. Applied ethics and economic theory, analysis and critical interpretation will be used to further illuminate the case study material.DiscussionThe significance of our research in this new area of ethics will lie in providing recommendations for regulatory bodies, device manufacturers, clinicians, health care institutions, policy makers and professional societies, to ensure surgical patients receive sufficient information before providing consent for pelvic floor surgery. In addition, we shall provide a wealth of information for future study in other areas of surgery and clinical management, and provide suggestions for changes to health policy. (shrink)

Three studies test eight hypotheses about (1) how judgment differs between people who ascribe greater vs. less moral relevance to choices, (2) how moral judgment is subject to task constraints that shift evaluative focus (to moral rules vs. to consequences), and (3) how differences in the propensity to rely on intuitive reactions affect judgment. In Study 1, judgments were affected by rated agreement with moral rules proscribing harm, whether the dilemma under consideration made moral rules versus consequences of choice salient, (...) and by thinking styles (intuitive vs. deliberative). In Studies 2 and 3, participants evaluated policy decisions to knowingly do harm to a resource to mitigate greater harm or to merely allow the greater harm to happen. When evaluated in isolation, approval for decisions to harm was affected by endorsement of moral rules and by thinking style. When both choices were evaluated simultaneously, total harm -- but not the do/allow distinction -- influenced rated approval. These studies suggest that moral rules play an important, but context-sensitive role in moral cognition, and offer an account of when emotional reactions to perceived moral violations receive less weight than consideration of costs and benefits in moral judgment and decision making. (shrink)

The relevance of scientific knowledge for science and technology policy and regulation has led to a growing debate about the role of values. This article contributes to the clarification of what specific functions cognitive and noncognitive values adopt in knowledge generation and decisions, and what consequences the operation of values has for policy making and regulation. For our analysis, we differentiate between three different types of decision approaches, each of which shows a particular constellation of cognitive and noncognitive (...) values. Our objectives are to present a structured analysis of the varying functions that different kinds of values can adopt, as well as the value-related tensions and trade-offs they give rise to. We argue that the operation of noncognitive values in scientific knowledge generation, policy, and regulatory decision making can be understood as an enabling factor, rather than a limiting one. (shrink)

The incessancy of the educational reforms of recent decades in Western countries, and their prominent association with conceptions of quality drawn from industry and commerce, tend to becloud the lack of educational substance at the heart of many of the more influential of the reform patterns. This lack betokens something of a sophisticated renaissance of the late nineteenth-century mentality of payment-by-results. Exploration of the reforms also reveals a preoccupation with performance which bypasses the central concerns of education itself. Quality, in (...) short, becomes redefined by a privative rationality, which then furnishes the conceptual arena and the predominant language for decision-making in matters educational. Writings of two influential contemporary thinkers -- MacIntyre and Lyotard -- are reviewed to illustrate the nature and significance of what the reforms have neglected. These thinkers' contrasting analyses reveal how intricate the contexts of educational policy and practice have become in the pluralist circumstances of late modernity. Where MacIntyre adopts a largely traditionalist stance and Lyotard a largely dismissive one in the face of the competing inheritances which battle for the minds and hearts of learners, this paper suggests not a middle way, but a different way. This pursues a kind of thinking which is itself educational more than political, self-critical more than adversarial. Declining the path of self-assured advocacy it concentrates instead on opening up an educational issue which is more often overlooked, or busily bypassed, than understood: What actually befalls the experience of teachers and learners in the practical conduct of education? How can that experience benefit best as teaching and learning are defensibly practised? A range of communicative rather than combative virtues is identified in this connection and their promising import is briefly explored. (shrink)

Decision‐aiding software is probably the most important technological innovation from the perspective of lawyer decision‐making, as contrasted to efficient office management. That kind of technological breakthrough can be helpful to lawyers in negotiating settlements favorable to their clients without expensive litigation. The technology makes use of benefit‐cost analysis, multi‐criteria decision analysis, spreadsheet software, and especially super‐optimizing analysis whereby plaintiffs, defendants, and other parties can all come out ahead of their best initial expectations simultaneously. Decision‐aiding software can also be (...) helpful to lawyers in evaluating alternative precedents, statutes, regulations, and other legal policies to arrive at versions favorable to their clients without an expensive adoption campaign. (shrink)

The concept of Health in All Policies aims to improve the health outcomes associated with policies in an attempt to mitigate health disparities and provide optimal environments for healthier living. This multidisciplinary framework seeks to improve health through effective assessment and reformation of policy for organizations of any level and stature. The importance of integrating health in policy assessment and decision making is a key concept in the growing field of Health Impact Assessment.The World Health Organization defines (...) Health Impact Assessment as “a combination of procedures, methods, and tools by which a policy, program, or project may be judged as to its potential effects on the health of a population, and the distribution of those effects within the population.” HIA provides a mechanism for collaboration between various sectors and disciplines bridging the gap between research, policymaking, and implementation of policies, programs, and projects affecting health outcomes. In the United States, while some HIA efforts have focused on proposed public policies, HIA has been used primarily to analyze the health effects of proposed development projects and plans related to community design and transportation. (shrink)

The concept of Health in All Policies aims to improve the health outcomes associated with policies in an attempt to mitigate health disparities and provide optimal environments for healthier living. This multidisciplinary framework seeks to improve health through effective assessment and reformation of policy for organizations of any level and stature. The importance of integrating health in policy assessment and decision making is a key concept in the growing field of Health Impact Assessment.The World Health Organization defines (...) Health Impact Assessment as “a combination of procedures, methods, and tools by which a policy, program, or project may be judged as to its potential effects on the health of a population, and the distribution of those effects within the population.” HIA provides a mechanism for collaboration between various sectors and disciplines bridging the gap between research, policymaking, and implementation of policies, programs, and projects affecting health outcomes. In the United States, while some HIA efforts have focused on proposed public policies, HIA has been used primarily to analyze the health effects of proposed development projects and plans related to community design and transportation. (shrink)