In this paper I argue that applied ethics is a phenomenon spontaneously emerged between the Sixties and the Seventies and resulting from interbreeding of theoretical discussion in ethics and public discourse of liberal-democratic societies. I contend that the phenomenon’s novelty is in a peculiar relationship it has helped in establishing between ethical theories and real-world issues, and besides that the true nature of applied ethics is that of deliberation, whose tool is the faculty of judgment, or casuistry, understood the Kantian (...) way. (shrink)

For decades a debate has played out in the literature about who bioethicists are, what they do, whether they can be considered professionals qua bioethicists, and, if so, what professional responsibilities they are called to uphold. Health care ethics consultants are bioethicists who work in health care settings. They have been seeking guidance documents that speak to their special relationships/duties toward those they serve. By approving a Code of Ethics and Professional Responsibilities for Health Care Ethics Consultants, the American Society (...) for Bioethics and Humanities (ASBH) has moved the professionalization debate forward in a significant way. This first code of ethics focuses on individuals who provide health care ethics consultation (HCEC) in clinical settings. The evolution of the code's development, implications for the field of HCEC and bioethics, and considerations for future directions are presented here. (shrink)

Contemporary research ethics policies started with reflection on the atrocities perpetrated upon concentration camp inmates by Nazi doctors. Apparently, as a consequence of that experience, the policies that now guide human subject research focus on the protection of human subjects by making informed consent the centerpiece of regulatory attention. I take the choice of context for policy design, the initial prioritization of informed consent, and several associated conceptual missteps, to have set research ethics off in the wrong direction. The aim (...) of this paper is to sort out these confusions and their implications and to offer instead a straightforward framework for considering the ethical conduct of human subject research. In the course of this discussion I clarify different senses of autonomy that have been confounded and present more intelligible justifications for informed consent. I also take issue with several of the now accepted dogmas that govern research ethics. These include: the primacy of informed consent, the protection of the vulnerable, the substitution of beneficence for research's social purpose, and the introduction of an untenable distinction between innovation and research. (shrink)

This paper examines the historical rise of both cardiopulmonary resuscitation and the do-not-resuscitate order and the wisdom of their continuing status in U.S. hospital practice and policy. The practice of universal presumed consent to CPR and the resulting DNR policy are the products of a particular time and were responses to particular problems. In order to keep the excesses of technology in check, the DNR policies emerged as a response to the in-hospital universal presumed consent to CPR. We live with (...) this historical concretion, which seems to perpetuate a false culture that the patient's wishes must be followed. The authors are critical of the current U.S. climate, where CPR and DNR are viewed as two among a panoply of patient choices, and point to UK practice as an alternative. They conclude that physicians in the United States should radically rethink approaches to CPR and DNR. (shrink)

Bioethics has increasingly become a standard part of medical school education and the training of healthcare professionals more generally. This is a promising development, as it has the potential to help future practitioners become more attentive to moral concerns and, perhaps, better moral reasoners. At the same time, there is growing recognition within bioethics that nonideal theory can play an important role in formulating normative recommendations. In this chapter we discuss what this shift toward nonideal theory means for ethical curricula (...) within healthcare education. In particular, we contend that more attention to the particularities of historical and social context needs to be incorporated into bioethics training. To make this argument, we focus on two examples: teaching units on race and medicine and those that focus on stigma and coercion in mental health. For both, we show how a pedagogical approach in which educators focus on social injustice could influence how practitioners engage in ethics in the clinic. This chapter, then, demonstrates what a commitment to nonideal theory can mean practically when it comes to bioethics education. (shrink)

To promote ethical practices, healthcare managers must understand the ethical challenges encountered by key stakeholders. To characterize ethical challenges in Veterans Administration (VA) facilities from the perspectives of managers, clinicians, patients, and ethics consultants. We conducted focus groups with patients (n = 32) and managers (n = 38); semi-structured interviews with managers (n = 31), clinicians (n = 55), and ethics committee chairpersons (n = 21). Data were analyzed using content analysis. Managers reported that the greatest ethical challenge was fairly (...) distributing resources across programs and services, whereas clinicians identified the effect of resource constraints on patient care. Ethics committee chairpersons identified end-of-life care as the greatest ethical challenge, whereas patients identified obtaining fair, respectful, and caring treatment. Perspectives on ethical challenges varied depending on the respondent's role. Understanding these differences can help managers take practical steps to address these challenges. Further, ethics committees seemingly, are not addressing the range of ethical challenges within their institutions. (shrink)

In this paper I argue that a narrow view of justice dominates the bioethics literature. I urge a broader view. As bioethicists, we often conceive of justice using a medical model. This model focuses attention at a particular point in time, namely, when someone who is already sick seeks access to scarce or expensive services. A medical model asks how we can fairly distribute those services. The broader view I endorse requires looking upstream, and asking how disease and suffering came (...) about. In contrast to a medical model, a social model of justice considers how social determinants affect the health of a population. For example, social factors such as access to clean drinking water, education, safe workplaces, and police protection, profoundly affect risk for disease and early death. I examine one important social determinant of health, health care coverage, to show the limits of a medical model and the merits of a broader view. (shrink)

Definition of the problem: In parallel with public and philosophical discussions, there is an ongoing debate about euthanasia in theological ethics. In this situation it is helpful to provide a systematic overview of the different arguments and judgements. Arguments: A short introduction is followed by a first part dealing with the definition of terms. The second and major part concerning normative arguments is subdivided into three steps: the level of principles, the more concrete level of actions and finally the level (...) of social consequences. The third part presents some reflections following the eudaimonistic ethical tradition (the ethics of a good life and death) focusing on the central question: how to find meaning in life when faced with suffering. Conclusion: It would be fruitful to intensify the ethical reflection both on the problems concerning the foundations of social life, especially the meaning of dignity, autonomy and inviolability of human life, and social consequences of a liberal practice of euthanasia. In this context ethicists are challenged to reflect on the different approaches to what is or can be a good life and a human death. (shrink)

It was in the course of one particular clinical encounter that I came to realize the power of narrative, especially for expressing clinically presented ethical matters. In Husserlian terms, the mode of evidence proper to the unique and the singular is the very indirection that is the genius of story-telling. Moreover, the clinical consultant is unavoidably changed by his or her clinical involvement. The individuals whose situation is at issue have their own stories that need telling. Clinical ethics is in (...) this sense a way of helping patients, families, and, yes, health providers to discover and give voice to those stories. In this way, clinical ethics is an evoking of meaning. Kierkegaard understood this well: Indirect communication is the language for the unique and the otherwise inexpressible. (shrink)

Considerations of ethical questions regarding pets should take into account the nature of human-pet relationships, in particular the uniquely combined features of mutual companionship, quasi-family-membership, proximity, direct contact, privacy, dependence, and partiality. The approaches to ethical questions about pets should overlap with those of animal ethics and family ethics, and so need not represent an isolated field of enquiry, but rather the intersection of those more established fields. This intersection, and the questions of how we treat our pets, present several (...) unique concerns and approaches for focused examination. (shrink)

Bioethicists have recently expressed concern over a lack of quality control within the field. This apprehension focuses on bioethics expanding in ways that obscure its distinctive ethical remit and the specialist reasoning skills it requires. This thesis about the quality and conduct of bioethics may have particular relevance for clinical ethics. As one of the youngest offshoots of bioethics, the field focuses on the ethical issues that arise specifically in a clinical context. However, non-ethics specialists are increasingly involved in this (...) field. This means that clinical ethics could be especially vulnerable to the quality control concerns articulated within bioethics. The growing public profile of clinical ethics means that concerns over quality in this area warrant specific attention by those concerned with declining standards in bioethics and those working in clinical ethics. (shrink)

Kevin Wm. Wildes, S.J.; Religion in Bioethics: A Rebirth, Christian bioethics: Non-Ecumenical Studies in Medical Morality, Volume 8, Issue 2, 1 January 2002, Pa.

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)

“Clinical ethics consultants” have been practicing in the United States for about 50 years. Most of the earliest consultants—the “pioneers”—were “outsiders” when they first appeared at patients' bedsides and in the clinic. However, if they were outsiders initially, they acclimated to the clinical setting and became “insiders” very quickly. Moreover, there was some tension between traditional academics and those doing applied ethics about whether there was sufficient “critical distance” for appropriate reflection about the complex medical ethics dilemmas of the day (...) if one were involved in the decision making. Again, the pioneers deflected concerns by identifying and instituting safeguards to assure professional objectivity in clinical ethics consultation services. One might suggest that in moving inside and establishing normative practices, the pioneer clinical ethics consultants anticipated adoption of their routines and professionalization of the field. (shrink)

In 1969, the field of human genetics was in its infancy. Amniocentesis was a new technique for prenatal diagnosis, and a newborn genetic screening program had been established in one state. There were also concerns about the potential hazards of genetic engineering. A research group at the Hastings Center and Paul Ramsey pioneered in the discussion of genetics and bioethics. Two principal techniques have emerged as being of enduring importance: human gene transfer research and genetic testing and screening. This essay (...) tracks the development and use of these techniques and considers the ethical issues that they raise. (shrink)

The celebration of thirty years of publication of The Journal of Medicine and Philosophy provides an opportunity to reflect on how medical ethics has evolved over that period. The reshaping of the field has occurred in no small part because of the impact of branches of philosophy other than ethics. These have included influences from Kantian theory of respect for persons, personal identity theory, philosophy of biology, linguistic analysis of the concepts of health and disease, personhood theory, epistemology, and political (...) philosophy. More critically, medicine itself has begun to be reshaped. The most fundamental restructuring of medicine is currently occurring - stemming, in part, from the application of contemporary philosophy of science to the medical field. There is no journal more central to these critical events of the past three decades than The Journal of Medicine and Philosophy. (shrink)

In today’s globalized world, nations cannot be totally isolated from or indifferent to their neighbors, especially in regards to medicine and health. While globalization has brought prosperity to millions, disparities among nations and nationals are growing raising once again the question of justice. Similarly, while medicine has developed dramatically over the past few decades, health disparities at the global level are staggering. Seemingly, what our humanity could achieve in matters of scientific development is not justly distributed to benefit everyone. In (...) this paper, it will be argued that a global theoretical agreement on principles of justice may prove unattainable; however, a grass-roots change is warranted to change the current situation. The UNESCO Declaration on Bioethics and Human Rights will be considered as a starting point to achieve this change through extracting the main values embedded in its principles. These values, namely, respecting human dignity and tending to human vulnerability with a hospitable attitude, should then be revived in medical practice. Medical education will be one possible venue to achieve that, especially through role models. Future physicians will then become the fervent advocates for a global and just distribution of health care. (shrink)

The structure, content, and orientation of the contemporary medical record inadequately reflect the appropriate influence of patients' rights and bioethics on health care. Most tellingly, the medical chart reveals a remarkable absence of attention to medical ethics, except in the case of crisis management. But medical ethics informs both crisis decision-making and virtually all clinical interventions. Indeed, clinical care embodies a complex array of choices influenced by individual and cultural values, themselves reflecting religious beliefs, personal histories, psychologies, and social mores. (...) But the typical medical chart, which records clinical descriptions, analyses, and rationales for treatment, rarely identifies or accounts for this value-laden dimension of care and thus both over-simplifies and distorts the depiction of a patient's illness and its treatment. To better reflect the complex moral domain of clinical care, and assist in organizing its complex structure, a systematic procedure is proposed here to evaluate the ethical status of every patient: As a routine part of the clinical evaluation, in a designated Ethical Concerns section of the medical record, an ?ethics work-uP? is designed to serve as a moral ?diagnostic? analogous to its scientific counterpart. Adapted to the needs of individual patients, such evaluations should identify ethical problems, coordinate related data, resources, and opinion, and define the rationale for choices made and actions pursued. In establishing improved integration of the ?epistemologies? of care and the ?ethics? of care, the goals of a more humane, patient-centered medicine may be better met. (shrink)

Contemporary American medical ethics was born during a period of social ferment, a key theme of which was the espousal of individual rights. Driven by complex cultural forces united in the effort to protect individuality and self-determined choices, an extrapolation from case law to rights of patients was accomplished under the philosophical auspices of ‘autonomy’. Autonomy has a complex history; arising in the modern period as the idea of self-governance, it received its most ambitious philosophical elaboration in Kant's moral philosophy. (...) In examining the Kantian construction, it is evident that neither his universal moral imperative nor his rigorous application of self-legislated ethical action can sustain our own notions of moral agency in a pragmatic, pluralistic society. But the Kantian position is useful in highlighting that self-governance is not equivalent to ‘autonomy’, and this distinction defines the limits of autonomy in the clinical setting. A critique of Engelhardt's idea of ‘principle of permission’ is used to illustrate autonomy's eclipse as a governing principle for medical ethics. (shrink)

Despite growing interest in Islamic bioethics, little work has been done on research ethics in Islam, and even less on animal research ethics. This essay explores religious and scientific insights into the lives of animals used as research subjects, particularly in Iran. The inner lives of animals and their relationship to their Creator as relayed by the Qur'an, ethological research on animal minds, and neuroethical reflection on painience are brought together to question the current, relatively unrestricted use of research animals (...) in Iran. The essay concludes that Islamic sources and the desire of Iranian clinicians to treat laboratory animals in line with them could poise Muslims to take the lead in developing alternatives to animal research. Further, recent suggestions that human and animal research guidelines and protections should be brought closer together are examined in light of these findings. (shrink)

This article analyzes the comparative history of the law and practice of abortion and assisted reproduction in the United States to consider the interplay between medical paternalism and legal paternalism. It supplements existing critiques of paternalism as harmful to women's equality with the medical perspective, as revealed through the writings of Alan F. Guttmacher, to consider when legal regulation might be warranted.

The paper presents an account of suffering as a multi-level phenomenon based on concepts such as mood, being-in-the-world and core life value. This phenomenological account will better allow us to evaluate the hardships associated with dying and thereby assist health care professionals in helping persons to die in the best possible manner. Suffering consists not only in physical pain but in being unable to do basic things that are considered to bestow meaning on one’s life. The suffering can also be (...) related to no longer being able to be the person one wants to be in the eyes of others, to losing one’s dignity and identity. These three types of suffering become articulated by a narrative that holds together and bestows meaning on the whole life and identity of the dying person. In the encounter with the patient, the health-care professional attempts to understand the suffering-experience of the patient in an empathic and dialogic manner, in addition to exploring what has gone wrong in the patient’s body. Matters of physician assisted suicide and/or euthanasia—if it should be legalized and if so under which conditions—need to be addressed by understanding the different levels of human suffering and its positive counterpart, human flourishing, rather than stressing the respect for patient autonomy and no-harm principles, only. In this phenomenological analysis the notions of vulnerability and togetherness, ultimately connecting to the political-philosophical issues of how we live together and take care of each other in a community, need to be scrutinized. (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)

The question of whether the universe is expanding or contracting serves as a model for current questions facing the medical humanities. The medical humanities might aptly be described as a metamedical multiverse encompassing many separate universes of discourse, the most prominent of which is probably bioethics. Bioethics, however, is increasingly developing into a new interdisciplinary discipline, and threatens to engulf the other medical humanities, robbing them of their own distinctive contributions to metamedicine. The philosophy of medicine considered as a distinct (...) field of study has suffered as a result. Indeed, consensus on whether the philosophy of medicine even constitutes a legitimate field of study is lacking. This paper presents an argument for the importance of a broad conception of the philosophy of medicine and the central role it should play in organizing and interpreting the various fields of study that make up the metamedical multiverse. (shrink)

Although many of the pioneers of present-day bioethics came from religious and theological backgrounds, the recent controversy about the role of religion in bioethics has elicited much attention. Timothy Murphy would ban religion from bioethics altogether. Much of the ado hinges on conflicting understandings of just what bioethics is and just what religion is. This paper attempts to make more explicit how the fields of bioethics and religion have been understood in this context, and how they should not be understood. (...) We begin by looking at bioethics as a field: its origins, purpose, scope, and its methods. We then examine the notion of religion, looking especially at its importance for bioethics. Humanity is not just Homo sapiens but also Homo religiosus. Religion is more than a code of ethics; it gives insight into many of the foundational matters of bioethics. (shrink)

The fundamental claim that the practice of medicine is essentially a moral enterprise remains highly contentious, not least among the dominant traditional moral theories. The medical profession itself is today characterized by multicultural pluralism and moral relativism that have left the Hippocratic moral tradition largely in disarray. In this paper, I attempt to clarify the ambiguity about practicing medicine as a moral enterprise and echo Pellegrino’s call for a phenomenologically and teleologically derived philosophy of medicine. I proffer a realistic trifocal (...) matrix in which the virtuous moral agency and the teleologically derived moral imperative of the physician are comprehensively integrated with an action-guiding practical analytical framework for the resolution of ethical dilemmas in medicine. I argue that this trifocal perspective points us towards an authentic philosophy of medicine that is not only verifiable through Lonerganian self-appropriation, but also authentically objective through the possible moral self-transcendence of the good physician. (shrink)

As the public profile of bioethics rises, and as litigation about issues ranging from assisted reproduction to gene therapy multiplies, the presence of bioethics experts in a litigation context has become more common. Dozens of appellate opinions refer to bioethics testimony in the lower courts. Today's technical advisory services for attorneys advertise bioethics experts along with experts in scientific fields. A single bioethicist has served as an expert in more than fifty cases. In all likelihood, opportunities for bioethicists to fill (...) the role of testifying expert will grow as medicine and biotechnology become more complex. Bioethics experts have also been involved in several other kinds of litigation-related activities, including investigation, consultation with attorneys, preparing reports that express expert opinions, and explaining and defending these opinions by deposition.Despite the growth of these activities by bioethicists, they have never been free of controversy, have recently been received with little enthusiasm by the judiciary, and could become highly problematic in the future. (shrink)

The aim of this study was to assess nurses’ and physicians’ ethical dilemmas in clinical practice. Nurses and physicians of the Clinical Hospital Centre Rijeka were surveyed (N = 364). A questionnaire was used to identify recent ethical dilemma, primary ethical issue in the situation, satisfaction with the resolution, perceived usefulness of help, and usage of clinical ethics consultations in practice. Recent ethical dilemmas include professional conduct for nurses (8%), and near-the-end-of-life decisions for physicians (27%). The main ethical issue is (...) limiting life-sustaining therapy (nurses 15%, physicians 24%) and euthanasia and physician-assisted suicide (nurses 16%, physicians 9%). The types of help available are similar for nurses and physicians: obtaining complete information about the patient (37% vs. 50%) and clarifying ethical issues (31% vs. 39%). Nurses and physicians experience similar ethical dilemmas in clinical practice. The usage of clinical ethics consultations is low. It is recommended that the individual and team consultations should be introduced in Croatian clinical ethics consultations services. (shrink)

Ethics designates a structured process by which important human values and meanings of life are understood and tackled. Therein, the ability to discuss openly and reflect on (aka deliberation) understandings of moral problems, on solutions to these problems, and to explore what a meaningful resolution could amount to is highly valued. However, the indicators of what constitutes a high-quality ethical deliberation remain vague and unclear. This article proposes and develops a pragmatist approach to evaluate the quality of deliberation. Deliberation features (...) three important moments: (1) broadening and deepening the understanding of the situation, (2) envisioning action scenarios, (3) coming to a judgment based on the comparative evaluation of scenarios. In this paper, we propose seven criteria to evaluate ethical deliberations: (1) collaborative diversity, (2) experiential literacy, (3) organization of experiences, (4) reflective capacity to instrumentalize the experiences of others, (5) interactional creativity, (6) openness of agents, (7) quality of the reformulation of scenarios. These criteria are explained and applied to the three moments of deliberation. Based on these criteria, three kinds of outcomes for deliberations are identified and discussed: good ethical deliberations, partial ethical deliberations, bad ethical deliberations. Our proposal will guide researchers and practitioners interested in the evaluation of the quality of ethical deliberations. It provides a reference tool that allows them to identify the possible limitations of a deliberation and to implement actions aimed at correcting these limitations in order to achieve the desired qualitative objectives. (shrink)

This qualitative social scientific study explores professional texts of healthcare ethics to understand the ways in which ethical professionalism in medicine and nursing are culturally constructed in Finland. Two books in ethics, published by Finnish national professional organizations—one for nurses and one for physicians—were analyzed with the method of critical discourse analysis. Codes of ethics for each profession were also scrutinized. Analysis of the texts sought to reveal what is taken for granted in the texts as well as to speculate (...) what appeared to be relegated to the margins of the texts or left entirely invisible. Physicians’ ethics was discovered to emphasize objectivity and strong group membership as a basis for ethical professionalism. The discourses identified in the physicians’ ethics guidebook were universal ethics, reductionism, non-subjectivity, and threat. Nursing ethics was discovered to highlight reflectivity as its central focus. This idea of reflectivity was echoed in the identified discourses: local ethics, enlightenment, and moral agency. The analysis exposes a cultural gap between the ethics discourses of medicine and nursing. More work is needed to bridge ethics discourses in Finland in a way that can support healthcare professionals to find common ground and to foster inclusivity in ethical dialogue. Further development of bioethical practices is suggested as a potential way forward. (shrink)

Assisted reproductive technology is a global market engaging a variety of local moral economies where the construction of the demand–supply relationship takes different forms through the operation of the politics of value. This paper analyzes how the market–culture relationship works in different settings, showing how power and resources determine what value will, or will not, accrue from that relationship. A commodity’s potential economic value can only be realized through the operation of the market if its cultural status is seen to (...) be legitimate. At the same time, local moral economies and their associated social orders are potentially susceptible to the destabilizing implications of new commodities. The formal or informal organization of power relationships in the market–culture interaction can enable potential value to become manifest and tangible over time or block its path. The interaction is steered through national institutional sources of cultural authority embedded in state and religion, where the visible contest in the politics of value is conducted. Increasingly, that interaction finds its expression in transnational institutions of governance where the struggle for control of the cultural agenda reflects the global nature of the ART market. (shrink)

The global development of human embryonic stem cell science and its therapeutic applications are dependent on the nature of its engagement at national and international levels with key cultural values and beliefs concerning the moral status of the early human embryo. This article argues that the political need to reconcile the promise of new health technologies with the cultural costs of scientific advance, dependent in this case on the use of the human embryo, has been met by the evolution of (...) bioethics as a political community, transnational network, and bureaucratic device. Bioethics has become the political means for the creation of a global moral economy where the trading and exchange of values is normalized and legitimated. As a result of such trading, value compromises are produced capable of legitimizing the regulatory policies necessary for maintaining public trust in the new science. (shrink)

In this paper three models of teaching and learning medical ethics are discussed critically, the traditional and revised vocational models, and the patient-centred model. The autonomy-oriented patient-centred ethics of Beauchamp and Childress is rejected in favour of a hermeneutic practical ethics. A performative conception of ethics teaching is recommended as the most appropriate model for use in the theory and practice of ethics pedagogy.

Contemporary research ethics policies started with reflection on the atrocities perpetrated upoconcentration camp inmates by Nazi doctors. Apparently, as a consequence of that experience, the policies that now guide human subject research focus on the protection of human subjects by making informed consent the centerpiece of regulatory attention. I take the choice of context for policy design, the initial prioritization of informed consent, and several associated conceptual missteps, to have set research ethics off in the wrong direction. The aim of (...) this paper is to sort out these confusions and their implications and to offer instead a straightforward framework for considering the ethical conduct of human subject research. In the course of this discussion I clarify different senses of autonomy that have been confounded and present more intelligible justifications for informed consent. I also take issue with several of the now accepted dogmas that govern research ethics. These include: the primacy of informed consent, the protection of the vulnerable, the substitution of beneficence for research's social purpose, and the introduction of an untenable distinction between innovation and research. (shrink)

Individuals each have their own unique conceptions of what is good. Nevertheless, because human beings have common needs, there is a significant overlap in their appreciation of what counts as good...

In this article I defend a rule utilitarian approach to paternalistic policies in research with human participants. Some rules that restrict individual autonomy can be justified on the grounds that they help to maximize the overall balance of benefits over risks in research. The consequences that should be considered when formulating policy include not only likely impacts on research participants, but also impacts on investigators, institutions, sponsors, and the scientific community. The public reaction to adverse events in research (such as (...) significant injury to participants or death) is a crucial concern that must be taken into account when assessing the consequences of different policy options, because public backlash can lead to outcomes that have a negative impact on science, such as cuts in funding, overly restrictive regulation and oversight, and reduced willingness of individuals to participate in research. I argue that concern about the public reaction to adverse events justifies some restrictions on the risks that competent, adult volunteers can face in research that offers them no significant benefits. The paternalism defended here is not pure, because it involves restrictions on the rights of investigators in order to protect participants. It also has a mixed rationale, because individual autonomy may be restricted not only to protect participants from harm but also to protect other stakeholders. Utility is not the sole justification for paternalistic research policies, since other considerations, such as justice and respect for individual rights/autonomy, must also be taken into account. (shrink)