The main claim of this paper is that the method outlined and used in Aristotle’s Ethics is an appropriate and credible one to use in bioethics. Here “appropriate” means that the method is capable of establishing claims and developing concepts in bioethics and “credible” that the method has some plausibility, it is not open to obvious and immediate objection. It begins by suggesting why this claim matters and then gives a brief outline of Aristotle’s method. The main argument is made (...) in three stages. First, it is argued that Aristotelian method is credible because it compares favourably with alternatives. In this section it is shown that Aristotelian method is not vulnerable to criticisms that are made both of methods that give a primary place to moral theory (such as utilitarianism) and those that eschew moral theory (such as casuistry and social science approaches). As such, it compares favourably with these other approaches that are vulnerable to at least some of these criticisms. Second, the appropriateness of Aristotelian method is indicated through outlining how it would deal with a particular case. Finally, it is argued that the success of Aristotle’s philosophy is suggestive of both the credibility and appropriateness of his method. (shrink)

The spectacular progress in assisted reproduction technology that has been witnessed for the past thirty years resulted in emerging new ethical dilemmas as well as the revision of some perennial ones. The paper aims at a feminist approach to oocyte and spare embryo donation for research. First, referring to different concepts of autonomy and informed consent, we discuss whether the decision to donate oocyte/embryo can truly be an autonomous choice of a female patient. Secondly, we argue the commonly adopted language (...) of gift is misleading and that calling for altruism could put female patients at risk of exploitation. Finally, we point out that the presence of gender stereotypes in the procreative area casts doubt whether even a more robust notion of informed consent manages to overcome this risk. (shrink)

A “no ethics” principle has long been prevalent in science and has demotivated deliberation on scientific ethics. This paper argues the following: An understanding of a scientific “ethos” based on actual “value preferences” and “value repugnances” prevalent in the scientific community permits and demands critical accounts of the “no ethics” principle in science. The roots of this principle may be traced to a repugnance of human dignity, which was instilled at a historical breaking point in the interrelation between science and (...) ethics. This breaking point involved granting science the exclusive mandate to pass judgment on the life worth living. By contrast, respect for human dignity, in its Kantian definition as “the absolute inner worth of being human,” should be adopted as the basis to ground science ethics. The pathway from this foundation to the articulation of an ethical duty specific to scientific practice, i.e., respect for objective truth, is charted by Karl Popper’s discussion of the ethical principles that form the basis of science. This also permits an integrated account of the “external” and “internal” ethical problems in science. Principles of the respect for human dignity and the respect for objective truth are also safeguards of epistemic integrity. Plain defiance of human dignity by genetic determinism has compromised integrity of claims to knowledge in behavioral genetics and other behavioral sciences. Disregard of the ethical principles that form the basis of science threatens epistemic integrity. (shrink)

This paper analysed the nature of autonomy, in particular respect for autonomy in medical ethics/bioethics in Japan. We have undertaken a literature survey in Japanese and English and begin with the historical background and explanation of the Japanese wordJiritsu (autonomy). We go on to identify patterns of meaning that researchers use in medical ethics / bioethics discussions in Japan, namely, Beauchamp and Childress’s individual autonomy, relational autonomy, and O’Neill’s principled autonomy as the three major ways that autonomy is understood. We (...) examine papers discussing these interpretations. We propose using the term ‘a form of autonomy’ first used by Edmund Pellegrino in 1992 and examine the nature of ‘a form of autonomy.’ We finally conclude that the crux of what Pellegrino calls ‘something close to autonomy,’ or ‘a form of autonomy' might best be understood as the minimization of physician paternalism and the maximization of respect for patient preference. Simultaneously, we introduce a family-facilitated approach to informed consent and respond to criticism by Laura Sullivan. Finally, we discuss cross-cultural approaches and global bioethics. Furthermore, we use the term ‘Bioethics across the Globe’ instead of ‘Global Bioethics’, calling for international scholars to write works to provide an in-depth understanding of each country. We conclude that deep understanding of others is pivotal for dialogue to be of value. We hope this article will deepen the reader’s understanding of Japan and will contribute to the progress of bioethics worldwide. (shrink)

This paper spells out and discusses four assumptions of the deficit model type of thinking. The assumptions are: First, the public is ignorant of science. Second, the public has negative attitudes towards (specific instances of) science and technology. Third, ignorance is at the root of these negative attitudes. Fourth, the public’s knowledge deficit can be remedied by one-way science communication from scientists to citizens. It is argued that there is nothing wrong with ignorance-based explanations per se. Ignorance accounts at least (...) partially for many cases of opposition to specific instances of science and technology. Furthermore, more attention needs to be paid to the issue of relevance. In regard to the evaluation of a scientific experiment, a technology, or a product, the question is not only who knows best?, but also what knowledge is relevant and to what extent?. Examples are drawn primarily from the debate on genetic engineering in agriculture. (shrink)

Demokratien geraten zunehmend unter Druck. Dabei wird die Bedeutung von Demokratie selbst zum Gegenstand der Auseinandersetzung. Diese Auseinandersetzungen nimmt der vorliegende Band zum Anlass, die Bedeutung von Demokratie grundsätzlich zu untersuchen. Mit dem Begriff der Konstituenzien sind dabei jene wesentlichen Bedingungen gemeint, die Demokratie ausmachen. Die meisten dieser Bedingungen sind normativ. Was Demokratie ist, wird auch und gerade dadurch bestimmt, was Demokratie sein sollte. Damit geht es um jene Normen, deren Verwirklichung politische Praktiken zu demokratischen Praktiken macht. Sind diese Normen (...) nur eingeschränkt verwirklicht, mindert sich der demokratische Gehalt von Politik. Inwieweit ist dann nun aber eigentlich der Fall? Und was können wir dagegen tun? Antworten auf diese Fragen geben einschlägige Vertreterinnen und Vertreter aus Philosophie, Politik- und Rechtswissenschaft. (shrink)

Engineers are traditionally regarded as trustworthy professionals who meet exacting standards. In this chapter I begin by explicating our trust relationship towards engineers, arguing that it is a linear but indirect relationship in which engineers “stand behind” the artifacts and technological systems that we rely on directly. The chapter goes on to explain how this relationship has become more complex as engineers have taken on two additional aims: the aim of social engineering to create and steer trust between people, and (...) the aim of creating automated systems that take over human tasks and are meant to invite the trust of those who rely on and interact with them. (shrink)

A summary of the philosophical literature on trust.

This paper scrutinizes the tension between individuals’ rights and paternalism. I will argue that no normative account that includes rights of individuals can justify hard paternalism since the infringement of a right can only be justified with the right or interest of another person, which is never the case in hard paternalism. Justifications of hard paternalistic actions generally include a deviation from the very idea of having rights. The paper first introduces Tom Beauchamp as the most famous contemporary hard paternalist (...) by outlining his moral theory (principlism) and showing why it, as it stands, has to allow for hard paternalism. Secondly, the paper focuses on the notion of rights within principlism. I will employ traditional theories of rights to make sense of rights in principlism. Unfortunately, this attempt fails. In the third part, then, I claim that rights can only be limited with reference to the rights or interests of others. This structure is the very point of rights, it is their bite. I will argue for this claim and show its implications. The most important implication is that not only principlism, but every normative theory that includes rights of individuals, has to abolish hard paternalism. (shrink)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

Freud (and later commentators) have failed to explain how the origins of psychoanalytical theory began with a positivist investment without recognizing a dual epistemological commitment: simply, Freud engaged positivism because he believed it generally equated with empiricism, which he valued, and he rejected ‘philosophy’, and, more specifically, Kantianism, because of the associated transcendental qualities of its epistemology. But this simple dismissal belies a deep investment in Kant’s formulation of human reason, in which rationality escapes natural cause and thereby bestows humans (...) with cognitive and moral autonomy. Freud also segregated human rationality: he divided the mind between (1) an unconscious grounded in the biological and thus subject to its own laws, and (2) a faculty of autonomous reason, lodged in consciousness and free of natural forces to become the repository of interpretation and free will. Psychoanalysis thus rests upon a basic Kantian construction, whereby reason, through the aid of analytic techniques, provides a detached scrutiny of the natural world, i.e. the unconscious mental domain. Further, sovereign reason becomes the instrument of self-knowing in the pursuit of human perfection. Herein lies the philosophical foundation of psychoanalytic theory, a beguiling paradox in which natural cause and autonomous reason — determinism and freedom — are conjoined despite their apparent logical exclusion. (shrink)

Durch genomweite Analysen werden vielfältige gesundheitsrelevante Informationen über eine Person gewonnen. Solche Informationen können die Behandlung von Krankheiten verbessern. Sie ermöglichen aber auch Vorhersagen, ob eine Person und deren Verwandte in Zukunft möglicherweise erkranken werden. Der neuartige Charakter des Informationseingriffs und sein prädiktive Potential bedürfen der ethischen, juristischen und ökonomischen Reflexion, damit diese Technologie zum Wohl der Patienten, der Familienangehörigen und der Solidargemeinschaft eingesetzt werden kann. Die vorliegende Schrift leistet mit ihren interdisziplinären, vom BMBF finanzierten Analysen dazu einen Beitrag. Grundlagen (...) für einen ethisch und juristisch verantwortbaren Einsatz der Genomsequenzierung zu medizinischen Zwecken werden erörtert und Eckpunkte für Kostenanalysen sowie Elemente einer “Guten klinischen Praxis” präsentiert. (shrink)

One of the main difficulties in assessing artificial intelligence (AI) is the tendency for people to anthropomorphise it. This becomes particularly problematic when we attach human moral activities to AI. For example, the European Commission’s High-level Expert Group on AI (HLEG) have adopted the position that we should establish a relationship of trust with AI and should cultivate trustworthy AI (HLEG AI Ethics guidelines for trustworthy AI, 2019, p. 35). Trust is one of the most important and defining activities in (...) human relationships, so proposing that AI should be trusted, is a very serious claim. This paper will show that AI cannot be something that has the capacity to be trusted according to the most prevalent definitions of trust because it does not possess emotive states or can be held responsible for their actions—requirements of the affective and normative accounts of trust. While AI meets all of the requirements of the rational account of trust, it will be shown that this is not actually a type of trust at all, but is instead, a form of reliance. Ultimately, even complex machines such as AI should not be viewed as trustworthy as this undermines the value of interpersonal trust, anthropomorphises AI, and diverts responsibility from those developing and using them. (shrink)

When philosophers consider factors compromising autonomy in consent, they often focus solely on the consent-giver’s agential capacities, overlooking the impact of the consent-receiver’s conduct on the consensual character of the activity. In this paper, I argue that valid consent requires justified trust in the consent-receiver to act only within the scope of consent. I call this the Trust Condition (TC), drawing on Katherine Hawley’s commitment account of trust. TC constitutes a belief that the consent-receiver is capable and willing to act (...) as we expect from them. If such trust is not warranted, I argue, consent lacks the appropriate normative grounds. After establishing TC, I explore its application in the sexual arena, asserting that due to the non-contractual dimensions of sexual activity — such as the dynamic nature of sexual desires and the absence of external factors effectively binding sexual partners to the terms of consent—trust is warranted in sexual consent by means of care. I define care as a special sensitivity and attention toward the partner’s will and discuss how this approach leads to safer intimate relationships in practice. (shrink)

IntroductionExtended decision -making through the use of proxy decision -makers has been enshrined in a range of International Codes, Professional Guidance and Statute,For example, the UK Mental Capacity Act section 9.1; The General Medical Council ; the US National Guardianship Association ; Nuffield Council on Bioethics ; CIOMS-WHO section 6. Court cases such as Re Quinlan in the US have also contributed to establishing the groundings for the legal status of the proxy, albeit in terms of who might be suitable (...) as a proxy in cases where there was no clear appointment of them by a still competent individual. and is now widely seen as a useful means through which we can exercise control over decisions that affect our lives when we have lost capacity to make these decisions for ourselves.I will here limit myself to discussion of proxy consent for adults appointed prior to the loss of competence by the person they are acting as proxy for. The issue of p. (shrink)

Although the therapeutic misconception (TM) has been well described over a period of approximately 20 years, there has been disagreement about its implications for informed consent to research. In this paper we review some of the history and debate over the ethical implications of TM but also bring a new perspective to those debates. Drawing upon our experience of working in the context of translational research for rare childhood diseases such as Duchenne muscular dystrophy, we consider the ethical and legal (...) implications of the TM for parental consent to research. In this situation, it is potentially the parent who is vulnerable to TM. In our analysis we not only consider the context of informed consent for research but also the wider environment in which the value of research is promoted, more broadly through the media but also more specifically through the communication strategies of patient organizations. All dissemination about developments in research for health runs the risk of portraying an overly optimistic view of the promise of biotechnological solutions and has the potential to encourage a ‘collective’ TM. In this paper we consider the challenge that TM presents to parents as well as explore the ethical and legal responsibilities of researchers to ensure an appropriately informed consent: compatible with a hopeful disposition of parents who consent for the their children whilst avoiding a blind and misleading optimism. (shrink)

Much bioethical literature and policy guidances for big data analytics in biomedical research emphasize the importance of trust. It is essential that potential participants trust so they will allow their data to be used to further research. However, comparatively, little guidance is offered as to what trustworthy oversight mechanisms are, or how policy should support them, as data are collected, shared, and used. Generally, “trust” is not characterized well enough, or meaningfully enough, for the term to be systematically applied in (...) policy development. Yet points made in the philosophical literature on trust can help. They allow us, not only to better distinguish the different ways the term “trust” may be interpreted, but also to better determine how different approaches to trust can align with policy and governance—in what ways they may relate to key bioethical concepts and related laws, and in what ways they can help to balance individual and group interests in data sharing. This article draws from the philosophical literature on trust to identify a relationship among consent, trust, and justice. Specifically, parallels are drawn between “character-trustworthiness” and “natural justice,” a set of widely held legal safeguards intended to ensure decision-makers follow a pattern of procedural fairness which protects the rights of the individual and thereby maintains public confidence in the decision-making process. Relevance to traditional bioethical principles, established laws, and consent procedures are addressed throughout. In conclusion, policy actions are suggested. (shrink)

This is critical review of Richard Dean’ book, The Value of Humanity in Kant’s Moral Theory. Dean’s book was evaluated, and some of his interpretations of Kant were critiqued. However, it concludes that Dean’s book is illuminating especially, as regards the distinction he made between consent and informed consent and their roles in biomedical practice.

A property analysis of the U.K. Biobank reveals a new imagination of the genomic biobank as a national commonpool resource. U.K. Biobank's treatment of property and governance exhibit both strengths and weaknesses that may be instructive to genome project planners around the world.

Although scientific and commercial excitement about genomic biobanks has subsided since the biotech bust in 2000, they continue to fascinate life scientists, bioethicists, and politicians alike. Indeed, these assemblages of personal health information, human DNA, and heterogeneous capital have become and remain important events in the ethics and politics of the life sciences. For starters, they continue to reveal and produce the central scientific, technological, and economic paradigms so ascendant in biology today: genome, infotech, and market. Biobanks also illustrate what (...) might be called the new distributive politics of biomedical research. Within those politics, the commodification of persons – or at the very least, of their informational representations – has challenged the ontological, ethical, and political underpinnings of the social contract between researchers and their human research subjects. In brief, biobanks are unsettling relations between genes, tissue, medical records, and persons. But it is also clear that these relations are increasingly being restructured by new rights of control, access, exclusion, and use known as “property,” both material and intellectual. (shrink)

Public health policies which involve active intervention to improve the health of the population are often criticized as paternalistic. This article argues that it is a mistake to frame our discussions of public health policies in terms of paternalism. First, it is deeply problematic to pick out which policies should count as paternalistic; at best, we can talk about paternalistic justifications for policies. Second, two of the elements that make paternalism problematic at an individual level—interference with liberty and lack of (...) individual consent—are endemic to public policy contexts in general and so cannot be used to support the claim that paternalism in particular is wrong. Instead of debating whether a given policy is paternalistic, we should ask whether the infringements of liberty it contains are justifiable, without placing any weight on whether or not those infringements of liberty are paternalistic. Once we do so, it becomes apparent that a wide range of interventionist public health policies are justifiable. (shrink)

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, the turn to (...) a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

This article provides a critical assessment of some aspects of Ann Kerr and Tom Shakespeare's Genetic Politics: from eugenics to genome. In particular, I evaluate their claims: (a) that bioethics is too ‘top down’, involving normative prescriptions, whereas it should instead be ‘bottom up’ and grounded in social science; and (b) that contemporary bioethics has not dealt particularly well with people's moral concerns about eugenics. I conclude that several of Kerr and Shakespeare's criticisms are well-founded and serve as valuable reminders (...) to the bioethics community. These include the claims: that bioethics ought not to consist entirely of applying moral theory to cases; that bioethics must take account of relevant empirical evidence; and that bioethicists should be on the look out for those subtle social forces which can undermine the voluntariness of people's choices and consents. However, we should reject some of Kerr and Shakespeare's other criticisms and I conclude (amongst other things) that even ‘mainstream’ bioethics is better able to deal with difficult issues like eugenics than Kerr and Shakespeare suggest. (shrink)

Recent books, articles and plays about the ‘immortal’ HeLa cell line have prompted renewed interest in the history of tissue culture methods that were first employed in 1907 and became common experimental tools during the twentieth century. Many of these sources claim tissue cultures like HeLa had a “troubled past” because medical researchers did not seek informed consent before using tissues in research, contravening a long held desire for self-determination on the part of patients and the public. In this article, (...) I argue these claims are unfair and misleading. No professional guidelines required informed consent for tissue culture during the early and mid twentieth century, and popular sources expressed no concern at the widespread use of human tissues in research. When calls for informed consent did emerge in the 1970s and 1980s, moreover, they reflected specific political changes and often emanated from medical researchers themselves. I conclude by arguing that more balanced histories of tissue culture can make a decisive contribution to public debates today: by refuting a false dichotomy between science and its publics, and showing how ethical concepts such as informed consent arise from a historically specific engagement between professional and social groups. (shrink)

The ethics of biobanking is one of the most controversial issues in current bioethics and public health debates. For some, biobanks offer the possibility of unprecedented advances which will revolutionise research and improve the health of future generations. For others they are worrying repositories of personal information and tissue which will be used without sufficient respect for those from whom they came. Wherever one stands on this spectrum, from an ethics perspective biobanks are revolutionary. Traditional ethical safeguards of informed consent (...) and confidentiality, for example, simply don’t work for the governance of biobanks and as a result new ethical structures are required. Thus it is not too great a claim to say that biobanks require a rethinking of our ethical assumptions and frameworks which we have applied generally to other issues in ethics. This paper maps the key challenges and controversies of biobanking ethics; it considers; informed consent (its problems in biobanking and possibilities of participants’ withdrawal), broad consent, the problems of confidentiality, ownership, property and comercialisation issues, feedback to participants and the ethics of re-contact. (shrink)

Etzioni has recently proposed that the success of Internet enabled commerce is surprising due to what I label the “trust in strangers” problem. In here responding to Etzioni, I argue that the “trust in strangers” problem effectively dissolves once it is recognized that current manifestations of Internet commerce are not associated with high levels of anonymity, but rather, with high levels of surveillance. In doing so, I first outline how data capitalism and security considerations have contributed to Internet surveillance being (...) close to ubiquitous. Following this, I differentiate between three types of surveillance—i.e. top-down, bottom-up, networked—that many people who digitally connect rely upon. In concluding, I emphasize my basic argument. Namely, that it is “trust in surveillance”, rather than “trust in strangers”, that supports current manifestations of commerce online. (shrink)

The notion of autonomy commonly employed in medical ethics literature and practices is inadequate on three fronts: it fails to properly identify nonautonomous actions and choices, it gives a false account of which features of actions and choices makes them autonomous or nonautonomous, and it provides no grounds for the moral requirement to respect autonomy. In this paper I offer a more adequate framework for how to think about autonomy, but this framework does not lend itself to the kinds of (...) practical application assumed in medical ethics. A general problem then arises: the notion of autonomy used in medical ethics is conceptually inadequate, but conceptually adequate notions of autonomy do not have the practical applications that are the central concern of medical ethics. Thus, a revision both of the view of autonomy and the practice of “respect for autonomy” are in order. (shrink)

As a result of the world-wide COVID-19 epidemic, an internal tension in the goals of medicine has come to the forefront of public debate. Medical professionals are continuously faced with a tug of...

The origins of professional ethical codes and oaths are explored. Their legitimacy and usefulness within the profession are questioned and an alternative ethical source is suggested. This source relies on a commonly shared, naturally knowable set of principles known as common morality.

In projects concerning big data, ethical questions need to be answered during the design process. In this paper the Value Sensitive Design method is applied in the context of data-driven health services aimed at disease prevention. It shows how Value Sensitive Design, with the use of a moral dialogue and an ethical matrix, can support the identification and operationalization of moral values that are at stake in the design of such services. It also shows that using this method can support (...) meeting the requirements of the General Data Protection Regulation. (shrink)

Digital farming technologies promise to help farmers make well-informed decisions that improve the quality and quantity of their production, with less labour and less impact on the environment. This future, however, can only become a reality if farmers are willing to share their data with agribusinesses that develop digital technologies. To foster trust in data sharing, in Europe the EU Code of Conduct for agricultural data sharing by contractual agreement was launched in 2018 which encourages transparency about data use. This (...) article looks at the EU Code through the lens of literature on trust and contract agreements. We agree with the makers of the EU Code that a contract can make an important contribution to trust relationships as it is needed to mitigate the detrimental effects of power relationships between experts and non-experts. Building on Onora O’Neills perspective to trust, however, we argued that a contract can only be successful in fostering trust when information is comprehended by the more vulnerable party in this relationship who has to sign the contract, the more powerful partner takes responsibility to provide that information, and information is tailored to the information needs of the party signing the contract, even when data are re-used over a longer period. In addition, we think that differences between trust relationships and relationships of accountability, give reason to add to informed consent other more substantive ethical components in a more encompassing code of conduct. (shrink)

What is privacy? What does privacy mean in relation to biobanking, in what way do the participants have an interest in privacy, (why) is there a right to privacy, and how should the privacy issue be regulated when it comes to biobank research? A relational view of privacy is argued for in this article, which takes as its basis a general discussion of several concepts of privacy and attempts at grounding privacy rights. In promoting and protecting the rights that participants (...) in biobank research might have to privacy, it is argued that their interests should be related to the specific context of the provision and reception of health care that participation in biobank research is connected with. Rather than just granting participants an exclusive right to or ownership of their health information, which must be waived in order to make biobank research possible, the privacy aspect of health information should be viewed in light of the moral rights and duties that accompany any involvement in a research based system of health services. (shrink)

This article analyzes the contribution Christian ethics might be able to make to the ethical debate on policy and caregiving in health and social care in the United Kingdom. The article deals particularly with the concepts of solidarity and subsidiarity which are essential in Christian social ethics and health care ethics, and which may be relevant for the ethical debate on health and social caregiving in the United Kingdom. An important argument in the article is that utilitarian and market-driven policies (...) in the National Health Service (NHS) and the social care system have marginalized the position of the elderly and have seriously impoverished the quality of care for the elderly. The neglect of the elderly and other vulnerable groups is also the result of widespread consumerist attitudes among patients and of libertarian models of noninterference which are affirmed by a public ethos of self-sufficiency and counter-dependency. Those who need care dare not make their need known to others and ask for help, while simultaneously those who could help are so intimidated by the public affirmation of privacy and negative rights that they do not dare to offer help except if this is explicitly demanded. This distant and standoffish attitude is in an important way responsible for the fact that the voice of those in need is altogether lost to the public forum. Christian ethics puts much emphasis on responsibility and solidarity with the needy other but is not able to have much impact on the delivery of care in a secularized society and health care system like the NHS. Nonetheless, Christianity still has a powerful and respected voice, by speaking up for those who cannot speak for themselves, such as the elderly and the handicapped. Christians can find allies in the ethics of care and other relational approaches in health care ethics in order to combat libertarianism, consumerism, and utilitarianism. (shrink)

BackgroundResearch proactively and deliberately aims to bring about specific changes to how societies function and individual lives fare. However, in the ever-expanding field of ethical regulations and guidance for researchers, one ethical consideration seems to have passed under the radar: How should researchers act when pursuing actual, societal changes based on their academic work?Main textWhen researchers engage in the process of bringing about societal impact to tackle local or global challenges important concerns arise: cultural, social and political values and institutions (...) can be put at risk, transformed or even hampered if researchers lack awareness of how their ‘acting to impact’ influences the social world. With today’s strong focus on research impacts, addressing such ethical challenges has become urgent within in all fields of research involved in finding solutions to the challenges societies are facing. Due to the overall goal of doing something good that is often inherent in ethical approaches, boundaries to researchers’ impact of something good is neither obvious, nor easy to detect. We suggest that it is time for the field of bioethics to explore normative boundaries for researchers’ pursuit of impact and to consider, in detail, the ethical obligations that ought to shape this process, and we provide a four-step framework of fair conditions for such an approach. Our suggested approach within this field can be useful for other fields of research as well.ConclusionWith this paper, we draw attention to how the transition from pursuing impact within the Academy to trying to initiate and achieve impact beyond the Academy ought to be configured, and the ethical challenges inherent in this transition. We suggest a stepwise strategy to identify, discuss and constitute consensus-based boundaries to this academic activity. This strategy calls for efforts from a multi-disciplinary team of researchers, advisors from the humanities and social sciences, as well as discussants from funding institutions, ethical committees, politics and the society in general. Such efforts should be able to offer new and useful assistance to researchers, as well as research funding agencies, in choosing ethically acceptable, impact-pursuing projects. (shrink)

This essay examines issues involving personal privacy and informed consent that arise at the intersection of information and communication technology and population genomics research. I begin by briefly examining the ethical, legal, and social implications program requirements that were established to guide researchers working on the Human Genome Project. Next I consider a case illustration involving deCODE Genetics, a privately owned genetics company in Iceland, which raises some ethical concerns that are not clearly addressed in the current ELSI guidelines. The (...) deCODE case also illustrates some ways in which an ICT technique known as data mining has both aided and posed special challenges for researchers working in the field of population genomics. On the one hand, data-mining tools have greatly assisted researchers in mapping the human genome and in identifying certain “disease genes” common in specific populations. On the other hand, this technology has significantly threatened the privacy of research subjects participating in population genomics studies, who may, unwittingly, contribute to the construction of new groups that put those subjects at risk for discrimination and stigmatization. In the final section of this paper I examine some ways in which the use of data mining in the context of population genomics research poses a critical challenge for the principle of informed consent, which traditionally has played a central role in protecting the privacy interests of research subjects participating in epidemiological studies. (shrink)

In the 17th century, ‘reflexivity’ was coined as a new term for introspection and self-awareness. It thus was poised to serve the instrumental function of combating skepticism by asserting a knowing self. In this Cartesian paradigm, introspection ends in an entity of self-identity. An alternate interpretation recognized how an infinite regress of reflexivity would render ‘the self’ elusive, if not unknowable. Reflexivity in this latter mode was rediscovered by post-Kantian philosophers, most notably Hegel, who defined the self in its self-reflective (...) encounter with an other, and whose full articulation would occur at the final culmination of Reason's evolution. In the rising tide of 19th-century individualism, Emerson and Kierkegaard formulated constructions both in debt to, and in opposition against, Hegelian metaphysics. For each, although employing distinct strategies of self-consciousness, ‘the self’ reached its apogee through divine encounter. Characterized by personal responsibility and individual choice, their philosophies would later be subsumed by secular existentialists committed to defining moral individualism and asserting the possibilities for human freedom and selfauthentication. (shrink)

Transparency is now a fundamental principle for data processing under the General Data Protection Regulation. We explore what this requirement entails for artificial intelligence and automated decision-making systems. We address the topic of transparency in artificial intelligence by integrating legal, social, and ethical aspects. We first investigate the ratio legis of the transparency requirement in the General Data Protection Regulation and its ethical underpinnings, showing its focus on the provision of information and explanation. We then discuss the pitfalls with respect (...) to this requirement by focusing on the significance of contextual and performative factors in the implementation of transparency. We show that human–computer interaction and human-robot interaction literature do not provide clear results with respect to the benefits of transparency for users of artificial intelligence technologies due to the impact of a wide range of contextual factors, including performative aspects. We conclude by integrating the information- and explanation-based approach to transparency with the critical contextual approach, proposing that transparency as required by the General Data Protection Regulation in itself may be insufficient to achieve the positive goals associated with transparency. Instead, we propose to understand transparency relationally, where information provision is conceptualized as communication between technology providers and users, and where assessments of trustworthiness based on contextual factors mediate the value of transparency communications. This relational concept of transparency points to future research directions for the study of transparency in artificial intelligence systems and should be taken into account in policymaking. (shrink)

Every infant has a right to bodily integrity. Removing healthy tissue from an infant is only permissible if there is an immediate medical indication. In the case of infant male circumcision there is no evidence of an immediate need to perform the procedure. As a German court recently held, any benefit to circumcision can be obtained by delaying the procedure until the male is old enough to give his own fully informed consent. With the option of delaying circumcision providing all (...) of the purported benefits, circumcising an infant is an unnecessary violation of his bodily integrity as well as an ethically invalid form of medical violence. Parental proxy ‘consent’ for newborn circumcision is invalid. Male circumcision also violates four core human rights documents—the Universal Declaration of Human Rights, the Convention on the Rights of the Child, the International Covenant on Civil and Political Rights, and the Convention Against Torture. Social norm theory predicts that once the circumcision rate falls below a critical value, the social norms that currently distort our perception of the practice will dissolve and rates will quickly fall. (shrink)

This paper provides an empirical account of commercial genetic testing in China. Commercial predictive genetic testing has emerged and is developing rapidly in China, but there is no strict and effective governance. This raises a number of serious social and ethical issues as a consequence of the enormous potential market for such tests. The paper demonstrates that the commercialization of genetic testing and the lack of adequate regulation have created an environment in which dubious advertising practices and misleading and unprofessional (...) medical advice are commonplace. The consequences of these ethically problematic activities for the users of predictive tests are unknown. The paper concludes with a bioethical and social science perspective on the ethical governance issues raised by the dissemination and utilization of commercial genetic testing in Chinese society. (shrink)

Health checks or health screenings identify disease in people without a specific medical indication. So far, the perspective of health check users has remained underexposed in discussions about the ethics and regulation of health checks. In 2017, we conducted a qualitative study with lay people from the Netherlands. We asked what participants consider characteristics of good and bad health checks, and whether they saw a role for the Dutch government. Participants consider a good predictive value the most important characteristic of (...) a good health check. Information before, during and after the test, knowledgeable and reliable providers, tests for treatable disease, respect for privacy, no unnecessary health risks and accessibility are also mentioned as criteria for good health checks. Participants make many assumptions about health check offers. They assume health checks provide certainty about the presence or absence of disease, that health checks offer opportunities for health benefits and that the privacy of health check data is guaranteed. In their choice for provider and test they tend to rely more on heuristics than information. Participants trust physicians to put the interest of potential health check users first and expect the Dutch government to intervene if providers other than physicians failed to do so by offering tests with a low predictive value, or tests that may harm people, or by infringing the privacy of users. Assumptions of participants are not always justified, but they may influence the choice to participate. This is problematic because choices for checks with a low predictive value that do not provide health benefits may create uncertainty and may cause harm to health; an outcome diametrically opposite to the one intended. Also, this may impair the relationship of trust with physicians and the Dutch government. To further and protect autonomous choice and to maintain trust, we recommend the following measures to timely adjust false expectations: advertisements that give an accurate impression of health check offers, and the installation of a quality mark. (shrink)

Religious voices were important in the early days of the contemporary field of bioethics but have now become decidedly less prominent. This is unfortunate because religious elements are essential parts of the most foundational aspects of bioethics. The problem is that there is an incommensurability between religious language and languages of public discourse such as the “public reason” of John Rawls. To eliminate what is unique in religious language is to lose something essential. This paper examines the reasons for the (...) marginalization of religion in bioethics, shows the limitations of Rawls’s notion of public reason, and argues for a more robust role for theology in articulating a new language for public discourse in bioethics. (shrink)

Trust constitutes a fundamental strategy to deal with risks and uncertainty in complex societies. In line with the vast literature stressing the importance of trust in doctor–patient relationships, trust is therefore regularly suggested as a way of dealing with the risks of medical artificial intelligence (AI). Yet, this approach has come under charge from different angles. At least two lines of thought can be distinguished: (1) that trusting AI is conceptually confused, that is, that we cannot trust AI; and (2) (...) that it is also dangerous, that is, that we should not trust AI—particularly if the stakes are as high as they routinely are in medicine. In this paper, we aim to defend a notion of trust in the context of medical AI against both charges. To do so, we highlight the technically mediated intentions manifest in AI systems, rendering trust a conceptually plausible stance for dealing with them. Based on literature from human–robot interactions, psychology and sociology, we then propose a novel model to analyse notions of trust, distinguishing between three aspects: reliability, competence, and intentions. We discuss each aspect and make suggestions regarding how medical AI may become worthy of our trust. (shrink)

In this paper, there were presented ethical arguments concerning the application of modern techniques of genetic intervention in human procreation. In particular, the rationalistic arguments in favour of genetic interventions were critically presented, namely the argument on ethical neutrality of technology, liberal argument on procreative freedom and argument on genetic enhancement. There were also analysed the negative emotional reaction to genetic engineering. The main aim of the paper was to express the cognitive element from these emotions enabling a wider understanding (...) of human procreation and the values of parent-child relations. (shrink)

Volume 19, Issue 5, May 2019, Page 31-33.