The fields of human rights and public health ethics are each concerned with promoting health and elucidating norms for action. To date, however, little has been written about the contribution that these two justificatory frameworks can make together. This article explores how a combined approach may make a more comprehensive contribution to resolving normative health issues and to advancing a normative framework for global health action than either approach made alone. We explore this synergy by first providing overviews of public health ethics and of international human rights law relevant to health and, second, by articulating complementarities between human rights and public health ethics.
We argue that public health ethics can contribute to human rights by: (a) reinforcing the normative claims of international human rights law, (b) strengthening advocacy for human rights, and (c) bridging the divide between public health practitioners and human rights advocates in certain contemporary health domains. We then discuss how human rights can contribute to public health ethics by contributing to discourses on the determinants of health through: (a) definitions of the right to health and the notion of the indivisibility of rights, (b) emphasis on the duties of states to progressively realize the health of citizens, and (c) recognition of the protection of human rights as itself a determinant of health. We also discuss the role that human rights can play for the emergent field of public health ethics by refocusing attention on the health and illness on marginalized individuals and populations.
Actors within the fields of public health, ethics and human rights can gain analytic tools by embracing the untapped potential for collaboration inherent in such a combined approach.
General moral (ethical) principles play a prominent role in certain methods of moral reasoning and ethical decision-making in bioethics and public health. Examples include the principles of respect for autonomy, beneficence, nonmaleficence, and justice. Some accounts of ethics in public health have pointed to additional principles related to social and environmental concerns, such as the precautionary principle and principles of solidarity or social cohesion. This article provides an overview of principle-based methods of moral reasoning as they apply to public health ethics including a summary of advantages and disadvantages of methods of moral reasoning that rely upon general principles of moral reasoning. Drawing upon the literature on public health ethics, examples are provided of additional principles, obligations, and rules that may be useful for analyzing complex ethical issues in public health. A framework is outlined that takes into consideration the interplay of ethical principles and rules at individual, community, national, and global levels. Concepts such as the precautionary principle and solidarity are shown to be useful to public health ethics to the extent that they can be shown to provide worthwhile guidance and information above and beyond principles of beneficence, nonmaleficence, and justice, and the clusters of rules and maxims that are linked to these moral principles. Future directions likely to be productive include further work on areas of public health ethics such as public trust, community empowerment, the rights of individuals who are targeted (or not targeted) by public health interventions, individual and community resilience and wellbeing, and further clarification of principles, obligations, and rules in public health disciplines such as environmental science, prevention and control of chronic and infectious diseases, genomics, and global health.
A rich and growing body of literature has emerged on ethics in epidemiologic research and public health practice. Recent articles have included conceptual frameworks of public health ethics and overviews of historical developments in the field. Several important topics in public health ethics have also been highlighted. Attention to ethical issues can facilitate the effective planning, implementation, and growth of a variety of public health programs and research activities. Public health ethics is consistent with the prevention orientation of public health. Ethical concerns can be anticipated or identified early and effectively addressed through careful analysis and consultation.
The prevention of overweight sometimes raises complex ethical questions. Ethical public health frameworks may be helpful in evaluating programs or policy for overweight prevention. We give an overview of the purpose, form and contents of such public health frameworks and investigate to which extent they are useful for evaluating programs to prevent overweight and/or obesity.
Our search for frameworks consisted of three steps. Firstly, we asked experts in the field of ethics and public health for the frameworks they were aware of. Secondly, we performed a search in Pubmed. Thirdly, we checked literature references in the articles on frameworks we found. In total, we thus found six ethical frameworks. We assessed the area on which the available ethical frameworks focus, the users they target at, the type of policy or intervention they propose to address, and their aim. Further, we looked at their structure and content, that is, tools for guiding the analytic process, the main ethical principles or values, possible criteria for dealing with ethical conflicts, and the concrete policy issues they are applied to.
All frameworks aim to support public health professionals or policymakers. Most of them provide a set of values or principles that serve as a standard for evaluating policy. Most frameworks articulate both the positive ethical foundations for public health and ethical constraints or concerns. Some frameworks offer analytic tools for guiding the evaluative process. Procedural guidelines and concrete criteria for solving important ethical conflicts in the particular area of the prevention of overweight or obesity are mostly lacking.
Public health ethical frameworks may be supportive in the evaluation of overweight prevention programs or policy, but seem to lack practical guidance to address ethical conflicts in this particular area.
Tuberculosis is a major cause of morbidity and mortality globally. Recent scholarly attention to public health ethics provides an opportunity to analyze several ethical issues raised by the global tuberculosis pandemic.
Recently articulated frameworks for public health ethics emphasize the importance of effectiveness in the justification of public health action. This paper critically reviews the relationship between these frameworks and the published evidence of effectiveness of tuberculosis interventions, with a specific focus on the controversies engendered by the endorsement of programs of service delivery that emphasize direct observation of therapy. The role of global economic inequities in perpetuating the tuberculosis pandemic is also discussed.
Tuberculosis is a complex but well understood disease that raises important ethical challenges for emerging frameworks in public health ethics. The exact role of effectiveness as a criterion for judging the ethics of interventions needs greater discussion and analysis. Emerging frameworks are silent about the economic conditions contributing to the global burden of illness associated with tuberculosis and this requires remediation.
The concept of evidence-based medicine has strongly influenced the appraisal and application of empirical information in health care decision-making. One principal characteristic of this concept is the distinction between "evidence" in the sense of high-quality empirical information on the one hand and rather low-quality empirical information on the other hand. In the last 5 to 10 years an increasing number of articles published in international journals have made use of the term "evidence-based ethics", making a systematic analysis and explication of the term and its applicability in ethics important.
In this article four descriptive and two normative characteristics of the general concept "evidence-based" are presented and explained systematically. These characteristics are to then serve as a framework for assessing the methodological and practical challenges of evidence-based ethics as a developing methodology. The superiority of evidence in contrast to other empirical information has several normative implications such as the legitimization of decisions in medicine and ethics. This implicit normativity poses ethical concerns if there is no formal consent on which sort of empirical information deserves the label "evidence" and which does not. In empirical ethics, which relies primarily on interview research and other methods from the social sciences, we still lack gold standards for assessing the quality of study designs and appraising their findings.
The use of the term "evidence-based ethics" should be discouraged, unless there is enough consensus on how to differentiate between high- and low-quality information produced by empirical ethics. In the meantime, whenever empirical information plays a role, the process of ethical decision-making should make use of systematic reviews of empirical studies that involve a critical appraisal and comparative discussion of data.
Although obesity rates among US children have increased during the past 3 decades, effective public policies have been limited, and the quest for workable solutions raises ethical questions. To address these concerns, in 2010, the Robert Wood Johnson Foundation convened an expert panel to consider approaches to the ethics problems related to interventions for childhood obesity. On the basis of recommendations from the expert panel, we propose frameworks for policy approaches and ethical aspects of interventions and evaluation. We present these frameworks in the context of other papers in this collection and make recommendations for public health practice.
The ethical case for Open Access (OA) (free online access) to research findings is especially salient when it is public health that is being compromised by needless access restrictions. But the ethical imperative for OA is far more general: It applies to all scientific and scholarly research findings published in peer-reviewed journals. And peer-to-peer access is far more important than direct public access. Most research is funded so as to be conducted and published, by researchers, in order to be taken up, used, and built upon in further research and applications, again by researchers (pure and applied, including practitioners), for the benefit of the public that funded it – not in order to generate revenue for the peer-reviewed journal publishing industry (nor even because there is a burning public desire to read much of it). Hence OA needs to be mandated, by researchers' institutions and funders, for all research.
Against a background of on the one hand, a declining demography and a conservative family register system that emphasizes the importance of the blood line, and on the other hand, an increase in the number of people undergoing fertility treatment, the absence of a legal regulatory framework concerning ART matters is likely to result in an increasing number of contradictory situations. It is against this background that the paper sets out to examine the judgements of court cases related to ART, with a particular focus on the legal determination of parental status, and to link these to aspects of the legal and socio-ethical environment within which the courts make their judgements.
The methods used were thorough investigation of all the court cases concerning ART in the public domain in Japan, including the arguments of the concerned parties and the judgements so far delivered. With the court cases as a central focal point, trends in Japan, including deliberations by government and academic societies, are reviewed, and the findings of surveys on the degree of understanding and attitudes among the people toward ART are summarized.
In terms of the judgements to date, the central criteria used by the courts in determining parental status were the act of parturition and the consent of the husband of the concerned couple. The government and academic societies have displayed a cautious attitude toward ART, but the findings of attitude surveys among the people at large show a generally positive attitude toward ART. Attitudes toward the overwhelming importance hitherto attached to the bloodline are also seen to be changing.
The main conclusion is that in the absence of a legal regulatory framework for ART, there is likely to be an increase in the contradictions between the use of outdated legal precedents and the technical development of ART. Since much of the specialist discussion necessary for the formulation of a legal framework has already been carried out, the speedy enactment of comprehensive and at the same time flexible legislation would be highly desirable, but further wide-ranging discussion involving the general public is likely to be needed first.
Much of the bioethical literature addresses the problems of tertiary medicine, with little attention to the daily concerns of general practitioners (GPs). The present review assesses the current state of research into the range and nature of ethical issues for GPs, looking specifically at the content of the research, the methods employed, and the philosophical framework of the research. A systematic search of MEDLINE, CINAHL, and Sociofile identified nine articles which form the basis for this review. The majority of the research reviewed here is quantitative in nature, using hypothetical cases with closed questions and categorical responses. No consistently significant variables were identified. Decisions appear to be inconsistent in terms of theoretical models and moral psychology. Ethical issues of concern to GPs differed from those commonly reported in the bioethical literature. There is a paucity of research into the ethical concerns of general practice. The existing body of research is quantitative in nature, leaving many unanswered questions concerning the reasons behind the decisions of GPs. There is a need for qualitative studies to further our understanding of this area.
Purpose: This paper explores ethical issues related to the involvement of children in health-related research through the application of a conceptual model (the Miller and Kenny framework) to a current clinical trial on casting protocols for equinus gait of children with cerebral palsy (CP).
Summary of key points: The direct involvement of children in health-related research is important for maintaining and improving standards of paediatric clinical care. Ethical considerations around investigations involving this highly vulnerable population are complex, however, requiring the involvement of many levels of decision makers—government, research ethics boards (REBs), health care providers, parents, and children. The Miller and Kenny framework is useful in distinguishing these levels and heightening awareness of the complexities of the issues around engaging children in research. Considerations include the role of parents/caregivers in decision making, individual assessment of the child's decisional capacities, close attention to the child's context and life experience, provision of developmentally appropriate information about the research study, and careful assessment of dissent prior to withdrawing the child from the study.
Recommendations: Physical therapists involved in paediatric clinical practice and/or research must be knowledgeable about ethical principles, policies, and REB requirements. The Miller and Kenny framework is a helpful guide to clarify decision-making roles around children's participation in research.
assent; children; dissent; ethical issues; REB requirements; research participation; consentement; enfants; enjeux éthiques; exigences des comités d'éthique; participation à la recherche; refus
While a growing body of research is uncovering the aetiology and effective treatments for allergy, research that assess the broader ethical implications of this disease is lacking significantly. This article will demonstrate both the paucity of academic research concerning ethical implications in allergy and explain why ethical analysis is integral to formulating effective health strategies for allergic disease. An exhaustive literature search of publications in French and English identified less than 35 academic articles focussed on the topic of ethics and allergy; this is a miniscule number when compared to the amount of articles published on ethical issues related to other chronic illnesses, such as obesity. It is important to demonstrate to allergy specialists the need for, and utility of, further incorporating ethical analyses in allergology; the current success of Ethical, Legal, Social Implications (ELSI) research programmes in human genetics and nanotechnology will serve as notable examples. Indeed, future research and innovation in allergy will undoubtedly encounter ethical dilemmas and the allergology community should play a significant role in helping to address these issues. However, incorporating ethical analyses in allergology does not imply that the allergology community must acquire extensive knowledge in bioethics; instead, interdisciplinary research that incorporates expertise from allergology and bioethics would enable allergy specialists to advance critical knowledge development in this largely overlooked domain of study.
Allergy; Asthma; Ethics; Literature review; Health policy; ELSI; Knowledge transfer
The present article proceeds from the observation that the therapeutic relationship is basically unequal. This inequality essentially concerns the respective situation of the patient and his or her doctor vis-à-vis medical knowledge. A strict professionalism guarantees that this inequality remains factual and without essential value. Yet, if both partners unreflectively allow affectivity excessively to intrude into their relationship, their behaviour may then be inspired by subconscious, rather than rational, motives. In that case, the unverifiable allegations of philanthropy or paternalism may be used to rationalise a kind of 'medical sadism' which attempts to justify the will to humiliate the patient by means of the constraints inherent in medical care. The concept of ethical form is introduced as a non-verbal criterion of ethical reliability. It is mainly a way of training the will through the application of rationally justified rules of behaviour. In this context, it is suggested that an effort to remain constantly within the limits of professionalism represents a method of training for the achievement of some degree of ethical credibility in the therapeutic relationship. In the long term, such abstinence could constitute a sort of catharsis, and thereby help to reveal the non-rational motives in medical behaviour. Contrary to the belief prevailing in modern society, the established limits of medical knowledge are not so broad. The application of these limits would probably be the best method of preventing emotions from interfering undesirably in the therapeutic relationship.
As the science and technology of nanomedicine speed ahead, ethics, policy, and the law struggle to catch up. It is important to proactively address the ethical, social and regulatory aspects of nanomedicine to minimize its adverse impacts on the environment and public health and to avoid a public backlash. At present, the most significant concerns involve risk assessment, risk management of engineered nanomaterials (ENM), and risk communication in clinical trials. Though in vivo animal experiments and ex vivo laboratory analyses can increase our understanding of the interaction of ENM in biological systems, they cannot eliminate all of the uncertainty surrounding the exposure of a human subject to nanomedicine products in clinical trials. Significant risks can still materialize after a product has cleared the Phase I hurdle and is in Phase II or III clinical trial. Furthermore, as the use of ENM in nanomedicine increases, questions of social justice, access to health care and the use of nanotechnology for physical enhancement become increasingly important.
nanomedicine; nanotechnology; ethics; risk; safety; clinical trials; social justice; enhancement
Planning for the next pandemic influenza outbreak is underway in hospitals across the world. The global SARS experience has taught us that ethical frameworks to guide decision-making may help to reduce collateral damage and increase trust and solidarity within and between health care organisations. Good pandemic planning requires reflection on values because science alone cannot tell us how to prepare for a public health crisis.
In this paper, we present an ethical framework for pandemic influenza planning. The ethical framework was developed with expertise from clinical, organisational and public health ethics and validated through a stakeholder engagement process. The ethical framework includes both substantive and procedural elements for ethical pandemic influenza planning. The incorporation of ethics into pandemic planning can be helped by senior hospital administrators sponsoring its use, by having stakeholders vet the framework, and by designing or identifying decision review processes. We discuss the merits and limits of an applied ethical framework for hospital decision-making, as well as the robustness of the framework.
The need for reflection on the ethical issues raised by the spectre of a pandemic influenza outbreak is great. Our efforts to address the normative aspects of pandemic planning in hospitals have generated interest from other hospitals and from the governmental sector. The framework will require re-evaluation and refinement and we hope that this paper will generate feedback on how to make it even more robust.
The recent proliferation of health care report cards, especially in cardiac care, has occurred in the absence of an ethical framework to guide in their development and implementation. An ethical framework is a consistent and comprehensive theoretical foundation in ethics, and is formed by integrating ethical theories, relevant literature, and other critical information (such as the views of stakeholders). An ethical framework in the context of cardiac care provides guidance for developing cardiac report cards (CRCs) that are relevant and legitimate to all stakeholders. The purpose of this study is to develop an ethical framework for CRCs.
Delphi technique – 13 panelists: 2 administrators, 2 cardiac nurses, 5 cardiac patients, 2 cardiologists, 1 member of the media, and 1 outcomes researcher. Panelists' views regarding the ethics of CRCs were analyzed and organized into themes.
We have organized panelists' views into ten principles that emerged from the data: 1) improving quality of care, 2) informed understanding, 3) public accountability, 4) transparency, 5) equity, 6) access to information 7) quality of information, 8) multi-stakeholder collaboration, 9) legitimacy, and 10) evaluation and continuous quality improvement.
We have developed a framework to guide the development and dissemination of CRCs. This ethical framework can provide necessary guidance for those generating CRCs and may help them avoid a number of difficult issues associated with existing ones.
Physicians encounter complex and sensitive ethical challenges in the medical care of pregnant women with human immunodeficiency virus (HIV) infection. This paper identifies those ethical challenges and provides concrete clinical guidance for how they should be addressed in obstetric care. The paper begins with a brief historical review, to highlight and to call into question the civil rights model of the ethics of HIV infection that has dominated the literature, clinical practice, and public policy. The authors propose an alternative ethical framework. This framework begins by underscoring the public health obligations of both physicians and pregnant women with HIV infection. The framework is based on a clinical ethics that appeals to both beneficence-based and
autonomy-based obligations of the physician to the pregnant woman and the beneficence-based
obligations of both the physician and the pregnant woman to the fetal patient. This framework is
then deployed in a clinical ethical analysis of termination of pregnancy and contraception, partner
notification, disclosure and confidentiality of her serostatus by the patient to the health care team,
disclosure and confidentiality of her serostatus to other health care professionals, prevention of
vertical transmission, and advance directives.
The acquired immunodeficiency syndrome (AIDS) pandemic has raised difficult ethical issues in public policy formulation and in the care of patients infected with the human immunodeficiency virus (HIV). Many issues relate to measures proposed for the protection of the public from HIV infection. This article presents an analytic framework from which these measures can be rationally evaluated. Specific measures are assessed on the basis of their likelihood of success, in relation to their justification for infringement on individual rights, and with reference to other less intrusive measures that could accomplish the same objective. Case histories are discussed which raise ethical dilemmas in the care of HIV infected and high-risk patients. The application of this framework could assist physicians in analysing public health policy and making judgements in individual clinical situations.
AIDS; ethics; public health; individual rights
As the public's health-care needs increase in complexity, renewed attention is being given to the ethical dimensions of public health decision-making and the development of public health ethics as a bounded area of teaching and research. This article provides an overview of approaches to public health ethics and decision-making, and suggests ways to incorporate the professionalism competencies into the teaching of public health practice. The teaching of ethics language, concepts, and tools for decision analysis helps to prepare students for the inevitable ethical choices they will have to make in their professional practice. The teaching of ethics and professionalism and the experiences of professionals enrich each other and foster the critical link between education and practice.
Ethical guidelines for conducting clinical trials have historically been based on a perceived therapeutic obligation to treat and benefit the patient‐participants. The origins of this ethical framework can be traced to the Hippocratic oath originally written to guide doctors in caring for their patients, where the overriding moral obligation of doctors is strictly to do what is best for the individual patient, irrespective of other social considerations. In contrast, although medicine focuses on the health of the person, public health is concerned with the health of the entire population, and thus, public health ethics is founded on the societal responsibility to protect and promote the health of the population as a whole. From a public health perspective, research ethics should be guided by giving due consideration to the risks and benefits to society in addition to the individual research participants. On the basis of a duty to protect the population as a whole, a fiduciary obligation to realise the social value of the research and the moral responsibility to distribute the benefits and burdens of research fairly across society, how a public health perspective on research ethics results in fundamental re‐assessments of the proper course of action for two salient topical issues in research ethics is shown: stopping trials early for reasons of efficacy and the conduct of research on less expensive yet less effective interventions.
Public interest in issues concerning the maintenance of high ethical standards in the conduct of scientific research and its publication has been increasing. Some of the developments in these issues as reflected in the publication of the medical literature are traced here. This paper attempts to determine whether public interest is reflected in the specific requirements for authors for manuscript preparation as stated in the “Instructions to Authors” for articles being prepared for submission to 124 “high- impact” journals. The instructions to authors of these journals were read on the Web for references to ethical standards or requirements. The ethical issues that the instructions most often covered were specifically related to the individual journal's publication requirements. The results suggest that while the editors and publishers of the biomedical literature are concerned with promoting and protecting the rights of the subjects of the experiments in the articles they publish, and while these concerns are not yet paramount, they are evolving and growing.
In this paper we develop an ethical perspective for public and environmental health practice in consideration of the "right to know" by contrasting consequential and deontological perspectives with relational ethics grounded in the concept of fostering autonomy. From the consequential perspective, disclosure of public and environmental health risks to the public depends on the expected or possible consequences. We discuss three major concerns with this perspective: respect for persons, justice, and ignorance. From a deontological perspective, the "right to know" means that there is a "duty" to communicate about all public health risks and consideration of the principles of prevention, precaution, and environmental justice. Relational ethics develops from consideration of a mutual limitation of the traditional perspectives. Relational ethics is grounded in the relationship between the public and public/environmental health providers. In this paper we develop a model for this relationship, which we call "fostering autonomy through mutually respectful relationships." Fostering autonomy is both an end in public health practice and a means to promote the principles of prevention, precaution, and environmental justice. We discuss these principles as they relate to practical issues of major disasters and contaminants in food, such as DDT, toxaphene, chlordane, and mercury.
There is a wide variety of ethical arguments for public financing of health care that share a common structure built on a series of four logically related propositions regarding: (1) the ultimate purpose of a human life or human society; (2) the role of health and its distribution in society in advancing this ultimate purpose; (3) the role of access to or utilisation of health care in maintaining or improving the desired level and distribution of health among members of society, and (4) the role of public financing in ensuring the ethically justified access to and utilisation of health care by members of society. This paper argues that economics has much to contribute to the development of the ethical foundations for publicly financed health care. It focuses in particular on recent economic work to clarify the concepts of access and need and their role in analyses of the just distribution of health care resources, and on the importance of economic analysis of health care and health care insurance markets in demonstrating why public financing is necessary to achieve broad access to and utilisation of health care services.
Key Words: Ethics • economics • health care financing
The goal of the e-Health Code of Ethics is to ensure that people worldwide can confidently and with full understanding of known risks realise the potential of the Internet in managing their own health and the health of those in their care. The final e-Health Code of Ethics, presented in this paper, has been prepared as a result of the "e-Health Ethics Summit," which convened in Washington DC on 31 January 2000 - 2 February 2000. The summit, organized by the Internet Healthcare Coalition and hosted by the World Health Organisation/Pan-American Health Organisation (WHO/PAHO), was attended by a panel of about 50 invited experts from all over the world and produced the foundation for a draft code, which was released 18 February for an online public consultation period which ended on 14 April 2000. The final Washington e-Health Code of Ethics sets forth guiding principles under eight main headings: candor; honesty; quality; informed consent; privacy; professionalism in online health care; responsible partnering; and accountability.
Screening for unsuspected disease has both possible benefits and harms for those who participate. Historically the benefits of participation have been emphasized to maximize uptake reflecting a public health approach to policy; currently policy is moving towards an informed choice approach involving giving information about both benefits and harms of participation. However, no research has been conducted to evaluate the impact on health of an informed choice policy. Using psychological models, the first aim of this study was to describe an explanatory framework for variation in screening uptake and to apply this framework to assess the impact of informed choices in screening. The second aim was to evaluate ethically that impact. Data from a general population survey (n = 300) of beliefs and attitudes towards participation in diabetes screening indicated that greater orientation to the present is associated with greater social deprivation and lower expectation of participation in screening. The results inform an explanatory framework of social patterning of screening in which greater orientation to the present focuses attention on the disadvantages of screening, which tend to be immediate, thereby reducing participation. This framework suggests that an informed choice policy, by increasing the salience of possible harms of screening, might reduce uptake of screening more in those who are more deprived and orientated to the present. This possibility gives rise to an apparent dilemma where an ethical decision must be made between greater choice and avoiding health inequality. Philosophical perspectives on choice and inequality are used to point to some of the complexities in assessing whether there really is such a dilemma and if so how it should be resolved. The paper concludes with a discussion of the ethics of paternalism.
Screening; Public health approach; Informed choice; Autonomy; Paternalism; Health inequality; Utilitarianism; Egalitarianism; Prioritarianism