Each year thousands of individuals enrol in clinical trials as healthy volunteers to earn money. Some of them pursue research participation as a full-time or at least a part-time job. They call themselves professional or semiprofessional guinea pigs. The practice of paying healthy volunteers raises numerous ethical concerns. Different payment models have been discussed in literature. Dickert and Grady argue for a wage-payment model. This model gives research subjects a standardised hourly wage, and it is based on an assumption that (...) research participation is morally indistinguishable from other forms of unskilled labour. In this paper, I will challenge this assumption. I will argue that human guinea pigging has particular characteristics which taken together make it significantly different from other forms of labour. Participation in research is skill-independent. Healthy volunteers are valuable not because they are skilful persons, but because they are human bodies. The role of research volunteers is mainly passive. They are not asked to produce goods or deliver services. They are paid for enduring unpleasant, painful and risky interventions performed by investigators. Research volunteering involves inherent risks and uncertainties, and subjects have little or no control over their minimisation and materialisation. I conclude that participation in clinical research is a specific kind of activity. It is more like renting out one’s body to strangers, than working. Thus, research participation should not be treated on par with other forms of employment. (shrink)

Według standardowej koncepcji krzywdy, inkorporującej test kontrfaktyczny, osoba B została skrzywdzona, jeśli na skutek działania x osoby A znalazła się w gorszej sytuacji niż ta, w której znajdowałaby się, gdyby osoba A nie zrealizowała tego działania. Zastosowanie tej koncepcji do wyborów prokreacyjnych napotyka jednak dwa poważne problemy teoretyczne: tzw. problem nie-istnienia, będący także istotą spraw sądowych z tytułu „wrongful life”, oraz problem nie-tożsamości, opisany przez Derka Parfita. Problemy te ujawniają, że standardowa koncepcja krzywdy prowadzi do wniosków, które są całkowicie sprzeczne (...) z powszechnie podzielanymi intuicjami dotyczącymi obowiązków moralnych rodziców wobec przyszłych dzieci. Celem niniejszego artykułu jest analiza alternatywnej koncepcji krzywdy – tzw. krzywdy progowej. Wykazane zostanie, że koncepcja ta jest oporna na problem nie-istnienie, ale nie jest w stanie w sposób satysfakcjonujący rozwiązać problemu nie-tożsamości. (shrink)

Paying research subjects for their participation in biomedical studies is an increasingly common and acceptable practice. Nevertheless, it continues to raise numerous conceptual, ethical, and pract...

Reigning regulatory frameworks for biomedical research impose on researchers and research ethics committees an obligation to protect research participants from risks that are unnecessary, disproportionate to potential research benefits, and non-minimized. Where the research has no potential to produce results of direct benefit to the subjects and the subjects are unable to give consent, these requirements are strengthened by an additional condition, that risks should not exceed a certain minimal threshold. In this article, I address the question of whether there (...) should be limits of permissible risks in non-therapeutic research involving competent and healthy subjects. Some commentators argue that competent and informed individuals should have a right to participate even in extremely risky research and that research ethics committees should never reject studies because they are too dangerous. To use David Shaw's expression, competent volunteers should have ‘a right to participate in high-risk research’. I argue that this idea is ill-founded, as it does not take into account the social mission and complex collaborative nature of research practice as well as the inequity of power between researchers and subjects. Imposition of limits on permissible risks for healthy volunteers is justified by the need to protect research enterprise and the need to protect the weaker party, namely the subjects. Also, I suggest that the best way to set boundaries on research risks is to leave the judgment of risk acceptability to research ethics committees. (shrink)

One of the unmet challenges for risk–benefit assessment in biomedical research is whether there should be an upper limit of risk in non-beneficial studies involving competent and consenting participants, and if yes, how it should be defined. This chapter focuses on this second question. It examines the four dominant regulatory and conceptual approaches to setting a maximal risk threshold in research: no catastrophic harm/risk approach, pure procedural approach, numerical approach, and comparative approach. It then considers the pure procedural approach, which (...) leaves the judgment of risk acceptability to RECs discretion. The approach has significant advantages, but it is not free from certain shortcomings, such as unwarranted diversity and arbitrariness of RECs judgments. The chapter concludes by sketching the outlines of what is referred to as the “ELS procedural approach” that provides RECs with procedural recommendations for identifying an ethically, legally and socially acceptable upper limit of risk in non-beneficial research on volunteers. The ELS procedural approach is an improvement over the pure procedural approach. It is more standardized and accountable, but still context-sensitive and flexible. (shrink)

In contrast to most publications on the ethics of paying research subjects, which start by identifying and analyzing major ethical concerns raised by the practice (in particular, risks of undue inducement and exploitation) and end with a set of—more or less well-justified—ethical recommendations for using payment schemes immune to these problems, this paper offers a systematic, principle-based ethical analysis of the practice. It argues that researchers have aprima faciemoral obligation to offer payment to research subjects, which stems from the principle (...) of social beneficence. This principle constitutes an ethical “spine” of the practice. Other ethical principles of research ethics (respect for autonomy, individual beneficence, and justice/fairness) make up an ethical “skeleton” of morally sound payment schemes by providing additional moral reasons for offering participants (1) recompense for reasonable expenses; and (2a) remuneration conceptualized as a reward for their valuable contribution, provided (i) it meets standards of equality, adequacy and non-exploitation, and (ii) it is not overly attractive (i.e., it does not constitute undue inducement for participation or retention, and does not encourage deceptive behaviors); or (2b) remuneration conceptualized as a market-driven price, provided (i) it is necessary and designed to help the study achieve its social and scientific goals, (ii) it does not reinforce wider social injustices and inequalities; (iii) it meets the requirement of non-exploitation; and (iv) it is not overly attractive. The principle of justice provides a strong ethical reason for not offering recompenses for lost wages (or loss of other reasonably expected profits). (shrink)

Non-beneficial paediatric research is vital to improving paediatric healthcare. Nevertheless, it is also ethically controversial. By definition, subjects of such studies are unable to give consent and they are exposed to risks only for the benefit of others, without obtaining any clinical benefits which could compensate those risks. This raises ethical concern that children participating in non-beneficial research are treated instrumentally; that they are reduced to mere instruments for the benefit of science and society. But this would make the research (...) incompatible with the widely endorsed principle of the primacy of the human subject, which stipulates that the interests of the participating individual should prevail over the interests of science and society. This paper deals with this conflict. It analyses solutions to this problem developed in the literature, and shows that they are unsuccessful. Finally, it offers a new idea of how to reconcile the conduct of non-beneficial paediatric research with the PP. The paper argues for a new formula of the PP, and shows that it implies a specific non-comparative definition of the minimal risk threshold. (shrink)

This paper targets an orphan topic in research ethics, namely the so called principle of the primacy of the human being, which states that the interests of the human subject should always take precedence over the interests of science and society. Although the principle occupies the central position in the majority of international ethical and legal standards for biomedical research, it has been commented in the literature mainly in passing. With a few notable exceptions, there is little in-depth discussion about (...) the meaning and role of the principle. Several authors note that the principle is vogue, ambiguous and apparently conflicting with the accepted practice of conducting non-beneficial research on individuals unable to give consent. There are opinions that it is just “a vacuous figure of speech” and should be abandoned. This paper argues that the primacy principle is far from being “a vacuous figure of speech”, rather it should be seen as a threefold concept: a fundamental interpretative rule, a procedural rule, and a substantive rule aimed at protecting research subjects from instrumental treatment and unacceptable risks. This interpretation tracks back to the principle regulatory and normative origins in the Declaration of Helsinki of 1975, but also acknowledges changes in research ethics and practice, which took place at the turn on the twentieth and twenty-first centuries. Thus, the proposed reading of the principle is not only original, but also historically grounded and normatively fruitful. It provides a fresh and ethically rich perspective on extensively debated, but still controversial problem of an upper limit of permissible risks in non-beneficial studies. (shrink)

Clinical Ethics Consultations are an important tool for physicians in solving difficult cases. They are extremely common in North America and to a lesser extent also present in Europe. However, there is little data on this practice in Poland. We present results of a survey of 521 physicians practising in Poland concerning their opinion on CECs and related practices. We analysed the data looking at such issues as CECs’ perceived availability, use of CECs, and perceived usefulness of such support. Physicians (...) in our study generally encounter hard ethics cases, even—surprisingly—those who do not work in hospitals. Most physicians have no CEC access, and those that do still do not employ CECs. However, physicians perceive this form of support as useful—even more so among actual users of CECs. We compared these findings with similar studies from other European countries and the North America. We point out peculiarities of our results as compared to those in other countries, with some possible explanations. We hope the results may encourage regulatory debate on the need to formally introduce CECs into the Polish healthcare system. (shrink)

Volume 19, Issue 9, September 2019, Page 46-48.

The paper reports results of the very first survey-based study on the prevalence, frequency and nature of ethical or other non-medical difficulties faced by Polish physicians in their everyday clinical practice. The study involved 521 physicians of various medical specialties, practicing mainly in inpatient healthcare. The study showed that the majority of Polish physicians encounter ethical and other non-medical difficulties in making clinical decisions. However, they confront such difficulties less frequently than their foreign peers. Moreover, Polish doctors indicate different circumstances (...) as a source of the experienced problems. The difficulties most often reported relate to (i) patients (or their proxies) requests for medically non-indicated interventions; (ii) problems with communication with patients (or their proxies) due to the patients’ negative attitude, unwillingness to cooperate, or aggression; and (iii) various difficulties with obtaining informed consent. Polish physicians report difficulties associated with disagreements among care givers or scarcity of resources less frequently than doctors from other countries. The study’s findings provide support for the thesis that a significant portion of Polish physicians still follow a traditional, paternalistic, and hierarchical model of healthcare practice. Instead of promoting patient’s empowerment, engagement, and rights, they often consider these ideas as a threat to physicians’ professional authority and autonomy. The study leads to the conclusion that due to insufficient training in medical ethics, communication skills, and medical law, many Polish physicians lack the knowledge and competence necessary to adequately respond to challenges posed by modern healthcare practice. (shrink)

Although Directive 2001/20/EC of the European Parliament and of Council of 4 April 2001 on the approximation of the laws regulations and administrative provisions of the Member States relating to the implementation of good clinical practice in the conduct of clinical trials on medicinal products for human use does not contain an exception for emergency situations, and requires the informed consent of a legal representative in all cases where research is conducted on legally competent individuals who are unable to give (...) informed consent, in Poland, emergency research can be conducted without consent. Polish regulations on emergency research can hardly be treated as a result of intentional legislative policy. Our provisions arise from multiple and sophisticated interpretations of different regulations that govern medical experiments on human subjects and clinical trials. These interpretations can be summarized as follows: There are two categories of medical experiments: therapeutic and non-therapeutic experiments. Emergency research without consent may be conducted in the category of therapeutic experiment only.. Emergency research may be conducted without consent if there is a situation of great urgency in which the research subject’s life is in danger and there is no possibility of obtaining immediate consent from the research subject him or herself, or from his or her legal representative or guardianship court, and the research subject has not refused to give consent for the participation in an emergency therapeutic experiment. The legal representative or guardianship court shall be provided with all the relevant information concerning subject’s participation in an experiment as soon as possible. All projects of emergency research with intent to be done without the research subject’s consent must be approved by an independent bioethics committee. Because these five requirements seem to provide insufficient protection for a subject’s autonomy and rights it is necessary to add to them two other conditions: the emergency research could not be conducted using other research participants capable of giving informed consent; and informed consent for continued participation in the emergency research shall be obtained from either the participant him or herself or the legally authorized representative as soon as possible. A consolidated single Act that will govern all aspects of medical experiments on human subjects, including emergency research, should be prepared and enacted as soon as possible. (shrink)

Niektórzy filozofowie twierdzą, że można kogoś skrzywdzić albo wyświadczyć mu dobrodziejstwo, powołując go do istnienia. Twierdzenie to opiera się na założeniu, że możliwe jest porównanie aktualnego poziomu dobrostanu osoby z poziomem dobrostanu, jaki osoba ta miałaby, gdyby nigdy nie zaistniała. Celem tej pracy jest zbadanie, czy możliwe jest dokonanie takiej porównawczej oceny w sensowny, logiczny i metafizycznie niewadliwy sposób. Analizuję argumenty sformułowane przez Nilsa Holtuga i Melindę Roberts na rzecz tezy, że istnienie może być gorsze albo lepsze dla osoby od (...) nieistnienia. Zaczynam od przedyskutowania Holtugowskiej obrony, która odwołuje się do trzech klasycznych teorii dobrostanu: teorii stanów mentalnych, teorii preferencji oraz teorii listy obiektywnej. Formuję zarzuty przeciwko jego argumentacji, w tym „zarzut braku odniesienia”, „zarzut braku podmiotu wartości”, „zarzut nieporównywalności”, „zarzut zrównania bezwartościowości z wartością zerową” oraz „zarzut naruszenia logiki relacji”. Z analiz tych wyciągam wniosek, że nie można twierdzić, że ktoś ma się gorzej albo lepiej niż miałby się, gdyby nie został powołany do istnienia. Na koniec, krótko omawiam argumentację Holtuga odwołującą się do teorii preferencji w ujęciu obiektu preferencji. Sugeruję, że również ten sposób obrony tezy, że istnienie może być gorsze albo lepsze dla osoby od nieistnienia, nie jest przekonujący, ponieważ teoria preferencji w ujęciu obiektu preferencji nie jest dobrym kandydatem na teorię dobrostanu. (shrink)

Czy można skrzywdzić osobę powołując ją do istnienia we wrodzonej chorobie lub niepełnosprawności? To pytanie od lat jest przedmiotem sporów w literaturze etycznej i prawniczej. Standardowa koncepcja krzywdy kontrfaktycznej nie sprawdza się bowiem na gruncie wyborów prokreacyjnych, przede wszystkim ze względu na tzw. problem nie-istnienia oraz problem nie-tożsamości. Celem niniejszego artykułu jest krytyczne przeanalizowanie alternatywnej koncepcji krzywdy wypracowanej przez Joela Feinberga – krzywdy opartej na racjonalnej preferencji. Wykazane zostanie, że koncepcja ta jest oporna na problem nie-istnienia. Rodzi jednak wiele problemów (...) interpretacyjnych i teoretycznych, w szczególności nie jest w stanie w sposób satysfakcjonujący rozwiązać problemu nie-tożsamości. (shrink)

Według standardowej koncepcji krzywdy, inkorporującej test kontrfaktyczny, osoba B została skrzywdzona, jeśli na skutek działania x osoby A znalazła się w gorszej sytuacji niż ta, w której znajdowałaby się, gdyby osoba A nie zrealizowała tego działania. Zastosowanie tej koncepcji do wyborów prokreacyjnych napotyka jednak dwa poważne problemy teoretyczne: tzw. problem nie-istnienia, będący także istotą spraw sądowych z tytułu „wrongful life”, oraz problem nie-tożsamości, opisany przez Derka Parfita. Problemy te ujawniają, że standardowa koncepcja krzywdy prowadzi do wniosków, które są całkowicie sprzeczne (...) z powszechnie podzielanymi intuicjami dotyczącymi obowiązków moralnych rodziców wobec przyszłych dzieci. Celem niniejszego artykułu jest analiza alternatywnej koncepcji krzywdy – tzw. krzywdy progowej. Wykazane zostanie, że koncepcja ta jest oporna na problem nie-istnienie, ale nie jest w stanie w sposób satysfakcjonujący rozwiązać problemu nie-tożsamości. (shrink)

A child’s objection, refusal and dissent regarding participation in non-beneficial biomedical research must be respected, even when the parents or legal representatives have given their permission. There is, however, no consensus on the definition and criteria of a meaningful and valid child’s objection. The aim of this article is to clarify this issue. In the first part we describe the problems of a child’s assent in research. In the second part we distinguish and analyze two models of a child’s objection (...) to research: the capacity-based model and the distress-based model. In the last part we present arguments for a broader and unified understanding of a child’s objection within regulations and practices. This will strengthen children’s rights and facilitate the entire process of assessment of research protocols. (shrink)

Patients have received experimental pharmaceuticals outside of clinical trials for decades. There are no industry-wide best practices, and many companies that have granted compassionate use, or ‘preapproval’, access to their investigational products have done so without fanfare and without divulging the process or grounds on which decisions were made. The number of compassionate use requests has increased over time. Driving the demand are new treatments for serious unmet medical needs; patient advocacy groups pressing for access to emerging treatments; internet platforms (...) enabling broad awareness of compelling cases or novel drugs and a lack of trust among some that the pharmaceutical industry and/or the FDA have patients’ best interests in mind. High-profile cases in the media have highlighted the gap between patient expectations for compassionate use and company utilisation of fair processes to adjudicate requests. With many pharmaceutical manufacturers, patient groups, healthcare providers and policy analysts unhappy with the inequities of the status quo, fairer and more ethical management of compassionate use requests was needed. This paper reports on a novel collaboration between a pharmaceutical company and an academic medical ethics department that led to the formation of the Compassionate Use Advisory Committee. Comprising medical experts, bioethicists and patient representatives, CompAC established an ethical framework for the allocation of a scarce investigational oncology agent to single patients requesting non-trial access. This is the first account of how the committee was formed and how it built an ethical framework and put it into practice. (shrink)

In this article, the question is discussed if and how Healthcare Ethics Committees (HECs) should be regulated. The paper consists of two parts. First, authors from eight EC member countries describe the status quo in their respective countries, and give reasons as to the form of regulation they consider most adequate. In the second part, the country reports are analysed. It is suggested that regulation of HECs should be central and weak. Central regulation is argued to be apt to improve (...) HECs’ accountability, relevance and comparability. To facilitate biomedical citizenship and ethical reflection, regulation should at the same time be weak rather than strict. Independence of HECs to deliberate about ethical questions, and to give solicited and unsolicited advice, should be supported and only interfered with by way of exception. One exception is when circumstances become temporary adversarial to ethical deliberation in healthcare institutions. In view of European unification, steps should be taken to develop consistent policies for both Eastern and Western European countries. (shrink)

A CHOICE Outstanding Academic Title 2012! Contemporary picturebooks open up spaces for philosophical dialogues between people of all ages. As works of art, picturebooks offer unique opportunities to explore ideas and to create meaning collaboratively. This book considers censorship of certain well-known picturebooks, challenging the assumptions on which this censorship is based. Through a lively exploration of children's responses to these same picturebooks the authors paint a way of working philosophically based on respectful listening and creative and authentic interactions, rather (...) than scripted lessons. This dialogical process challenges much current practice in education. The authors propose that a courageous and critical practice of listening is central to the facilitation of mutually educative dialogue. This book will be of interest to scholars and students of education studies, philosophy of education, literacy teaching and learning, children's literature, childhood and pedagogy. (shrink)

Exercise-based rehabilitation forms a key part of the UK National Health Service patient-care pathway for cardiac rehabilitation (CR). Only around half of all eligible patients attend core CR, however, with social inequalities affecting participation. Few qualitative studies have explored in-depth the key factors influencing engagement with CR, specifically from a sociological theoretical, and ethnographic perspective. Utilising an ethnographic approach allowed us to get a sense of the embodied experiences of 10 participants attending or declining core CR, together with a further (...) seven family members/significant others. This provided in-depth appreciation of participants’ lifeworld contexts as key influences on CR participation. The article draws on these qualitative data and focuses on 1) participants’ initial thoughts about CR; and 2) navigating the field of CR, analysed via thematic analysis. We utilise a Bourdieusian theoretical perspective to theorise the findings, including salient socio-cultural factors influencing attendance/non-attendance and (non)adherence. The article findings highlight how perceptions of CR and the ability to navigate the field are strongly influenced by habitus and capital, and how personal biographies and socio-material conditions affect adherence to CR programmes. The study provides original insights into embodied experiences of exercise-based CR, and novel understandings of the reasons for drop-out/poor adherence, theorised from a Bourdieusian perspective. (shrink)

Heidegger and ethics is a contentious conjunction of terms. Martin Heidegger himself rejected the notion of ethics, while his endorsement of Nazism is widely seen as unethical. This major new study examines the complex and controversial issues involved in bringing them together. By working backwards through his work, from his 1964 claim that philosophy has been completed to _Being and Time_, his first major work, Joanna Hodge questions Heidegger's denial that his enquires were concerned with ethics. She discovers a (...) form of ethics in Heidegger's thinking which elucidates his important distinction between metaphysics and philosophy. Against many contemporary views, she proposes therefore that ethics can be retrieved and questions the relation between ethics and metaphysics that Heidegger had made so pervasive. (shrink)

A person who is liable to defensive harm has forfeited his rights against the imposition of the harm, and so is not wronged if that harm is imposed. A number of philosophers, most notably Jeff McMahan, argue for an instrumental account of liability, whereby a person is liable to defensive harm when he is either morally or culpably responsible for an unjust threat of harm to others, and when the imposition of defensive harm is necessary to avert the threatened unjust (...) harm. Others may favour a purely noninstrumental account of liability: one that looks only to the past behaviour of the potentially liable person. We argue that both views are vulnerable to serious objections. Instead we develop and defend a new view of liability to defensive harm: the pluralist account. The pluralist account states that liability to defensive harm has at least two bases. First, if an attacker is morally or culpably responsible for an unjust attack then he has forfeited what we call his agency right, and in doing so he has made himself partially liable to defensive harm. Whether the attacker is fully liable to defensive harm depends, however, on whether the imposition of defensive harm would infringe a different right held by the attacker: his humanitarian right. Humanitarian rights are rights to be provided with urgently needed resources or to be protected from serious harms when others can do so at reasonably low cost. We argue the pluralist account avoids the objections to which the instrumental and noninstrumental views are vulnerable, coheres with our intuitive reactions in a wide range of cases, and sheds new light on the way different rights combine to determine a person's liability to suffer harm. (shrink)

Unprecedented advances in medicine, genetic engineering, and demographic forecasting raise new questions that strain the categories and assumptions of traditional ethical theories. Heyd's approach resolves many paradoxes in intergenerational justice, while offering a major test case for the profound problems of the limits of ethics and the nature of value.

The question of whether AI systems such as robots can or should be afforded moral agency or patiency is not one amenable either to discovery or simple reasoning, because we as societies constantly reconstruct our artefacts, including our ethical systems. Consequently, the place of AI systems in society is a matter of normative, not descriptive ethics. Here I start from a functionalist assumption, that ethics is the set of behaviour that maintains a society. This assumption allows me to exploit the (...) theoretical biology of sociality and autonomy to explain our moral intuitions. From this grounding I extend to consider possible ethics for maintaining either human- or of artefact-centred societies. I conclude that while constructing AI systems as either moral agents or patients is possible, neither is desirable. In particular, I argue that we are unlikely to construct a coherent ethics in which it it is ethical to afford AI moral subjectivity. We are therefore obliged not to build AI we are obliged to. (shrink)

This fully revised second edition suggests ways in which you can introduce philosophical enquiry to your Personal, Social and Health Education and Citizenship teaching and across the curriculum.

Conferring legal personhood on purely synthetic entities is a very real legal possibility, one under consideration presently by the European Union. We show here that such legislative action would be morally unnecessary and legally troublesome. While AI legal personhood may have some emotional or economic appeal, so do many superficially desirable hazards against which the law protects us. We review the utility and history of legal fictions of personhood, discussing salient precedents where such fictions resulted in abuse or incoherence. We (...) conclude that difficulties in holding “electronic persons” accountable when they violate the rights of others outweigh the highly precarious moral interests that AI legal personhood might protect. (shrink)

In 2014, Article 3 of the the Belgian Euthanasia Act (2002) (the Euthanasia Act) was amended (‘the Amendment’) to include the ‘capacity for discernment’ requirement. This paper explores the implications of this highly controversial Amendment. I remain unconvinced of the benefits for children < 12 years old suffering chronic or terminal illnesses. In Part One, I argue that the phrase ‘capacity for discernment’ is problematic and vulnerable to abuse; neither a consistent, widely accepted definition of the phrase has been established (...) nor a standardised method or procedure to adequately gauge a minor’s capacity for discernment. In Part Two I advance the argument that specifically for children < 12 years, aggressive and sophisticated paediatric palliative care treatment, which risks, but does not intend death, is more ethically justified than Euthanasia treatment. A definition of a child’s interests is best achieved through a care-based ethics framework; namely, the child’s relationship with their parents and family members, their doctors and medical practitioners is held to be an interest of crucial importance for the child. I conclude that paediatric palliative care arguably better promotes and upholds this interest. (shrink)

Saunkeah et al. analyze the aptness of extending the Belmont Principles of Respect for Persons, Beneficence and Justice to AI/AN tribal communities as a whole. They argue that to protect AI/...

Contemporary electronic music has splintered into numerous genres and subgenres, all of which share a concern with whether sound, in itself, bears meaning. Listening through the Noise considers how the experience of listening to electronic music constitutes a departure from the expectations that have long governed music listening in the West.

In this paper, we discuss the processes of racialisation on the example of biomedical research. We argue that applying the concept of racialisation in biomedical research can be much more precise, informative and suitable than currently used categories, such as race and ethnicity. For this purpose, we construct a model of the different processes affecting and co-shaping the racialisation of an individual, and consider these in relation to biomedical research, particularly to studies on hypertension. We finish with a discussion on (...) the potential application of our proposition to institutional guidelines on the use of racial categories in biomedical research. (shrink)

One of the interesting and occasionally controversial aspects of Dennett’s career is his direct involvement in the scientific process. This article describes some of Dennett’s participation on one particular project conducted at MIT, the building of the humanoid robot named Cog. One of the intentions of this project, not to date fully realized, was to test Dennett’s multiple drafts theory of consciousness. I describe Dennett’s involvement and impact on Cog from the perspective of a graduate student. I also describe the (...) problem of coordinating distributed intelligent systems, drawing examples from robot intelligence, human intelligence, and the Cog project itself. (shrink)

One of the interesting and occasionally controversial aspects of Dennett’s career is his direct involvement in the scientific process. This article describes some of Dennett’s participation on one particular project conducted at MIT, the building of the humanoid robot named Cog. One of the intentions of this project, not to date fully realized, was to test Dennett’s multiple drafts theory of consciousness. I describe Dennett’s involvement and impact on Cog from the perspective of a graduate student. I also describe the (...) problem of coordinating distributed intelligent systems, drawing examples from robot intelligence, human intelligence, and the Cog project itself. (shrink)

OBJECTIVE: Following two randomized controlled trials that demonstrated reduced mortality and better neurological outcome in cardiac arrest patients, mild therapeutic hypothermia was implemented in many intensive care units. Up to now, no large observational studies have confirmed the beneficial effects of mild therapeutic hypothermia. DESIGN: Internet-based survey combined with a retrospective, observational study. PATIENTS: All patients admitted to an intensive care unit in The Netherlands after cardiac arrest from January 1, 1999 until January 1, 2009. DATA SOURCE: Dutch National Intensive (...) Care Evaluation database. METHODS: The moment of implementation of mild therapeutic hypothermia for each hospital participating in the Dutch National Intensive Care Evaluation database was determined with an Internet survey. To compare mortality before and after implementation of mild therapeutic hypothermia, the odds ratio adjusted for Simplified Acute Physiology Score II score, age, gender, propensity score, and in- or out-of-hospital cardiac arrest was calculated. Patients were excluded if 1) they were admitted to an intensive care unit that did not respond to the survey, 2) they were admitted within 3 months after implementation of mild therapeutic hypothermia, 3) they had a Glasgow Coma Scale score of >8, or 4) they did not satisfy the Simplified Acute Physiology Score II inclusion criteria. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A total of 13,962 patients were admitted to an intensive care unit following cardiac arrest. In total 8,645 patients were excluded, 5,544 because of a Glasgow Coma Scale score of >8. Of the resultant 5,317 patients, 1,547 patients were treated before and 3,770 patients after implementation of mild therapeutic hypothermia. Patients admitted after implementation of mild therapeutic hypothermia had lower minimal and maximal temperatures (p < .0001) during the first 24 hrs on the intensive care unit compared to patients admitted before implementation of mild therapeutic hypothermia. The adjusted odds ratio of the hospital mortality of patients treated after implementation of mild therapeutic hypothermia was 0.80 (95% confidence interval of 0.65-0.98, p = .029). CONCLUSION: The results of this retrospective, observational survey suggest that implementation of mild therapeutic hypothermia in Dutch intensive care units is associated with a 20% relative reduction of hospital mortality in cardiac arrest patients. (shrink)

Industry-funded religious liberty legal groups have sought to undermine healthcare policy and law while simultaneously attacking the rights of sexual and gender minorities. Whereas past scholarship has tracked religiously-affiliated healthcare providers’ growing political power and attendant transformations to legal doctrine, our account emphasizes the political donors and visionaries who have leveraged religious providers and the U.S. healthcare system’s delegated structure to transform social policy and bureaucratic agencies more generally.

The aim of this chapter is to engage with the inherent humanism of bioethics and consider the possibility of thinking bioethics otherwise - beyond the belief in the intrinsic dignity and superior value of the human, and beyond the rules and procedures rooted in this belief. It is also to challenge what we may call the ‘cognitivist pretence’ of humanism, i.e. the conviction that the human can be distinguished from other forms of life by the inherent ‘truth’ and teleology of (...) his being which is to be revealed to him, and which he can uniquely grasp. The human as both a discrete subject and an object of bioethics becomes thus a critical point of interrogation in this study. What I want to outline in response is a non-systemic bioethics of relations which does not abdicate its ethical responsibility or its political commitment, although it questions many of the premises of established moral and political theories. Indeed, I want to ‘put to the test the pretentious belief that only a liberal and humanistic view of the subject can guarantee basic elements of human decency: moral and political agency and ethical probity’. But my project is more genealogical than futurologist. By revisiting the story of bioethics’ emergence as a separate discipline, I want to consider the following question: what if the cyborg rather than the human had been adopted as its foundation? Or, to put it another way, what would a bioethics for humans, animals and machines look like? (shrink)

Everyone knows what is feels like to be in pain. Scraped knees, toothaches, migraines, giving birth, cancer, heart attacks, and heartaches: pain permeates our entire lives. We also witness other people - loved ones - suffering, and we 'feel with' them. It is easy to assume this is the end of the story: 'pain-is-pain-is-pain', and that is all there is to say. But it is not. In fact, the way in which people respond to what they describe as 'painful' has (...) changed considerably over time. In the eighteenth and nineteenth centuries, for example, people believed that pain served a specific (and positive) function - it was a message from God or Nature; it would perfect the spirit. 'Suffer in this life and you wouldn't suffer in the next one'. Submission to pain was required. Nothing could be more removed from twentieth and twenty-first century understandings, where pain is regarded as an unremitting evil to be 'fought'. Focusing on the English-speaking world, this book tells the story of pain since the eighteenth century, addressing fundamental questions about the experience and nature of suffering over the last three centuries. How have those in pain interpreted their suffering - and how have these interpretations changed over time? How have people learnt to conduct themselves when suffering? How do friends and family react? And what about medical professionals: should they immerse themselves in the suffering person or is the best response a kind of professional detachment? (shrink)

In the decades since the Science Wars of the 1990s, climate science has become a crucible for the negotiation of claims about reality and expertise. This negotiation, which has drawn explicitly on the ideas and techniques of science and technology studies, has taken place in genres of fiction as well as non-fiction, which intersect in surprising ways. In this case study, I focus on two interwoven strands of this history. One follows Michael Crichton’s best-selling 2004 novel, State of Fear and (...) its reception by neo-conservatives as a commentary on the mis-uses of facts to stoke fear about anthropogenic climate change. The other considers Naomi Oreskes and Erik M. Conway’s 2010 publishing success Merchants of Doubt as the inverse, a demonstration of the forms of disinformation that have been used to undermine scientific consensus around climate change. I show that both Crichton’s as well as Oreskes and Conway’s approaches were critiqued by academic STS even as their accounts constituted the most high-profile performances of its stakes and the politics of knowledge since the Science Wars. In highlighting the STS practices deployed by each, as well as how those practices were differently linked to accusations of fear-mongering and a perversion of the purity of STS, I demonstrate the need for a reflexive history of STS. Such an approach, I argue, can better consider the social life of STS ideas and practices amidst calls for more politically-engaged approaches to knowledge production. (shrink)

Recently, scholars have described the emotional consequences of transnational motherhood on families. Research, however, has neglected to address the lives of migrant fathers and how they compare to those of migrant mothers. This article fills the gap by analyzing the experiences of Mexican transnational mothers and fathers residing in New Jersey. Ethnographic data and interviews show that parents behave in similar ways when internationally separated from children. However, their migration patterns and emotional responses to separation differ. I show that these (...) differences are tied to Mexican gender ideology in which women’s maternal roles are sacralized, whereas fathers’ roles are tied to financial provision. Although the contemporary Mexican transnational family structure challenges gender norms, the analysis of how parents understand their family roles when separated from their children proves gender ideals to be highly durable in the transnational context. (shrink)

The goals and tasks of neuroethics formulated by Farahany and Ramos (2020) link epistemological and methodological issues with ethical and social values. The authors refer simultaneously to the social significance and scientific reliability of the BRAIN Initiative. They openly argue that neuroethics should not only examine neuroscientific research in terms of “a rigorous, reproducible, and representative neuroscience research process” as well as “explore the unique nature of the study of the human brain through accurate and representative models of its function (...) and dysfunction”, but also its responsibilities or social consequences. In our commentary, we would like to concentrate on problem selection, which is shortly noticed by Farahany and Ramos, and by BRAIN Initiative’s Neuroethics Report itself. The document raises an important issue related to problem selection, which is strengthening or perpetuating existing prejudices and biases by choosing a research subject: “scientists are prompted to consider how the questions they choose to study in the laboratory might amplify existing biases.” This leads to several further problems: what constitutes bias?; how biases may be embedded in the selection of research programs?; is it possible to conduct completely unbiased research?; who should be a gatekeeper in the case of research that may amplify biases? We try to notice possible answers to these questions in the context of the research on differences (e.g., cognitive, medical, behavioral) between human populations. (shrink)

Panpsychism is the view, found in ancient and modern, Eastern and Western philosophies, that mind is a fundamental and ubiquitous feature of the universe. This article explores the use of panpsychism to support different views of God. It is seen that as a family of views, panpsychism is a theologically flexible position that has been used to support atheism, pantheism, panentheism, and traditional monotheism. However, the relationship between panpsychism and philosophy of religion is not infinitely flexible. Different versions of panpsychism (...) constrain these models of God, and vice versa. The different motivations for linking panpsychism to (dis)belief in God reveals the range of ways of interpreting the spiritual import of positing mentality in nature. (shrink)