An international medical tribunal should be established with power to impose criminal sanctions against physicians who are guilty of crimes against humanity.

The “Universal Declaration of Human Rights” and the “Geneva Declaration” by the World Medical Association, both in 1948, were preceded by the foundation of the United Nations in New York (1945), the World Medical Association in London (1946) and the World Health Organization in Geneva (1948). After the end of World War II the community of nations strove to achieve and sustain their primary goals of peace and security, as well as their basic premise, namely the health of (...) human beings. All these associations were well aware of the crimes by medicine, in particular by the accused Nazi physicians at the Nuremberg Doctors Trial (1946/47, sentence: August 1947). During the first conference of the World Medical Association (September 1947) issues of medical ethics played a major role: and a new document was drafted concerning the values of the medical profession. After the catastrophe of the War and the criminal activities of scientists, the late 1940s saw increased scrutiny paid to fundamental questions of human rights and medical ethics, which are still highly relevant for today’s medicine and morality. The article focuses on the development of medical ethics and human rights reflected in the statement of important persons, codes and institutions in the field. (shrink)

It is well known that prisoners’ human rights are often violated. In this chapter we examine whether guidelines can be effective in preventing such violations and in helping physicians resolve the significant conflicts of interest that they often face in trying to protect prisoners’ rights. We begin by explaining the role of clinical and ethical guidelines outside prisons, in the context of healthcare for non-incarcerated prisoners, and then the specific role of such guidelines within prisons, where (...) the main concerns are ensuring respect for the principle of equivalence of care, and for a prisoner patient’s autonomy in health care decisions. After reviewing and analysing various national and international guidelines, we review the literature and assess whether the good practices set out in these guidelines actually translate into changes in professional behaviour and consequent benefits for prisoners. It emerges that physicians both outside and within prisons tend to be insufficiently familiar with the relevant guidelines, and that they too infrequently use the guidance to make decisions, preferring instead to use personal codes of conduct. Guidelines designed specifically for the prison context are important to ensure equivalence of care and should be better known by health care personnel and other professional groups working in prison. Further guidelines should be developed that describe challenging situations and provide concrete guidance as to how to deal with them. (shrink)

The main contentions of this paper are twofold. First, there is a more than century‐old Japanese tradition of human rights based on a fusion of Western concepts of natural rights and a radical reinterpretation of Confucianism, the major proponent of which was the Japanese thinker Nakae Chomin. Secondly, this tradition, although a minority view, is crucial for remedying the serious defects in the present Japanese medical system. In the latter half of the nineteenth century, Nakae Chomin sought (...) to reinterpret Chinese tradition, especially Confucianism, by injecting the concepts of popular sovereignty and democratic equality, drawn from Western sources. The resulting view maintained the Confucian commitment to a moral nexus for society, but replaced hierarchy with egalitarianism. The pressing need for such an approach to patients' rights in present‐day Japan is illustrated by two recent cases: the photographing and commercial exploitation of patients' genitals without serious response by authorities, and the attempt by physicians to manipulate the time of death and, possibly, to improperly pressure family members in order to transplant organs from the brain‐dead victim of a criminal assault. Such problems stem from hierarchy and paternalism, which seem to be a legacy of the rapid, state‐sponsored introduction of Western medicine in the mid‐nineteenth century, and in particular from the government's adoption of and support for German military medicine as a model for Japan. (shrink)

This paper claims that health insurance is not a human right; that the reason the medical care industry is in such an unsatisfactorystate is that there is not enough competition in the field. To wit, there are government interferences on both the supply and demand sides of health care; the former in terms of restrictions on entry for physicians, the latter based on the moral hazard attendant on the subsidization of medicine.

The call has been made for global bioethics. In an age of pandemics, international drug trials, and genetic technology, health has gone global, and bioethics must follow suit. George Annas is one among a number of thinkers to recommend that bioethics expand beyond its traditional domain of patient–physician interactions to encompass a broader range of health-related matters. Medicine, Annas argues, must “develop a global language and a global strategy that can help to improve the health of all of the world's (...) citizens.” Individual countries cannot address global health issues, and culturally specific principles are inadequate for addressing global bioethics concerns. We will need a language and moral framework grounded in a foundation of universally shared, transcultural judgments about humankind that will also recognize moral pluralism. The claim has been made that such a foundation already exists in human rights, and that human rights should, therefore, be the new lingua franca of bioethics. (shrink)

There is more to modern health than new scientific discoveries, the development of new technologies, or emerging or re‐emerging diseases. World events and experiences, such as the AIDS epidemic and the humanitarian emergencies in Bosnia and Rwanda, have made this evident by creating new relationships among medicine, public health, ethics, and human rights. Each domain has seeped into the other, making allies of public health and human rights, pressing the need for an ethics of public health, (...) and revealing the rights‐related responsibilities of physicians and other health care workers. (shrink)

This book is a collection of papers presented at an interdisciplinary workshop at the Calgary Institute for the Humanities in May 1980. The three broad issues covered are: the physician-patient relationship, the allocation of responsibility among doctors and nurses, and the political and social framework of the health care system. The first set of essays is concerned with the moral and legal aspects of the physician-patient relationship. The link between knowledge and power is examined as well as the moral dilemmas (...) posed by medical technology. These initial essays would alone justify this publ. (shrink)

These essays, first presented at a conference, “Coping with Sickness,” held in Italy in 1997, address ethical and regulatory medical issues within a historical context. Many of the essays, while addressing interesting topics, combine policy analysis and critical cultural theory. Critical cultural theory can be intellectually engaging at times but is generally irrelevant to public officials concerned with specific policy issues.Coping with Sickness is the third and final volume derived from a series of conferences cosponsored by the European Science Foundation (...) and the Euroconferences Activity of the European Union. The eight essays are organized chronologically and cover a range of disparate topics: medical practitioners and the Spanish Inquisition , the history of autopsy legislation in German since 1800 , the history of “sadism” as a medical term in the nineteenth century , folk medicine in Holland in the late nineteenth century , abortion in Weimar Germany , drug testing in Africa in the early twentieth century , comparative policies toward STDs , and the debate over brain death in Germany . As might be expected in an anthology of this sort, the quality varies considerably. Nonetheless, the subjects addressed in this volume are engaging—much to the credit of the editors.Two pieces in particular represent the range of these collected essays. In “Vacher the Ripper and the Construction of the Nineteenth‐Century Sadist,” Angus McLaren, one of the best historians writing on the history of sexuality today, explores the “discovery” of sadism in the late nineteenth century by focusing on the dramatic trial of Joseph Vacher, who was charged in 1895 for the brutal sexual murder of a woman in Champuis. He later confessed to the murder and the sexual violation of another seven females and four males. Vacher had a long history of mental illness; indeed, he had been institutionalized in July 1893 following a failed attempt at suicide that left a bullet lodged in his head. At the trial the criminologist Alexandre Lacassagne was brought in as an expert witness to testify that Vacher was not insane but an antisocial sadist, as revealed by his dabbling in anarchism, vagabondism, and homosexuality. As a consequence, Vacher was found guilty and given a death sentence.McLaren finds in this trial an example of the social construction of a new medical concept, “sadism.” The emergence of the concept of sadism, he argues, reflected a “gendered notion” of defining appropriate male and female behavior; physicians at the turn of the century believed that “civilized men were most threatened, not by excess passion, but by the enervation spawned by urban life” . The concept of sadism was also employed by doctors to enhance their own authority and to alert the public to the dangers of a male manifesting “feminine traits” and to “beat back” homosexuality.There is much interesting conjecture to McLaren's study, but what policy lessons should be drawn from this remains unclear. If every concept is actually a social construction, reflecting the social anxieties of the age, then is the fashionable concept of social construction itself socially constructed to enhance the authority of the medical historian?More interesting methodologically is Claudia Wiesemann's absorbing essay on the historical debate in Germany over “brain death.” Relying on Ulrich Beck's social theory of simple and reflexive modernization, she shows that, when confronted with complex scientific questions, the public has to decide between competing plausible scientific claims; as a result, political groups make use of scientific expertise and counterexpertise to push their favorite practical and legal solutions. (shrink)

For about five decades the phrase "sanctity-of-life" has been part of the Anglo-American biomedical ethical discussion related to abortion and end-of-life questions. Nevertheless, the concept's origin and meaning are unclear. Much controversy is based on the mistaken assumption that the concept denotes the absolute value of human life and thus dictates a strict prohibition on euthanasia and physician-assisted suicide. In this paper, I offer an analysis of the religious and philosophical history of the idea of "sanctity-of-life." Drawing on biblical (...) texts and interpretation as well as Kant's secularization of the concept, I argue that "sanctity" has been misunderstood as an ontological feature of biological human life, and instead locate the idea within the historical virtue-ethical tradition, which understands sanctification as a personal achievement through one's own actions. (shrink)

For about five decades the phrase “sanctity-of-life“ has been part of the Anglo-American biomedical ethical discussion related to abortion and end-of-life questions. Nevertheless, the concept’s origin and meaning are unclear. Much controversy is based on the mistaken assumption that the concept denotes the absolute value of human life and thus dictates a strict prohibition on euthanasia and physician-assisted suicide. In this paper, I offer an analysis of the religious and philosophical history of the idea of “sanctity-of-life.” Drawing on biblical (...) texts and interpretation as well as Kant’s secularization of the concept, I argue that “sanctity” has been misunderstood as an ontological feature of biological human life, and instead locate the idea within the historical virtue-ethical tradition, which understands sanctification as a personal achievement through one’s own actions. (shrink)

As sociologists deepen their examinations of human rights in their teaching, research, and thinking, it is essential that such work is conducted in a manner that is both mindful and critical of the knowledge we are building upon in sociology and human rights. As the authors of this volume reveal, creating sociological knowledge that examines human rights for the expansion of human rights is something that sociologists are well equipped to undertake, whether (...) through the use of mathematics, comparative-historical analysis, the study of emotions, conversations, or social psychology. In these chapters you will find the roots of the study of human rights deep within sociological research and thinking as well as emerging techniques that will push the discipline as it seeks to expand understanding of human rights together with so many other aspects of the social condition. (shrink)

In this paper, we analyze the legal situation regarding physician-assisted suicide in the world. Our hypothesis is that the prohibitive stance on physician-assisted suicide in most societies in the world today seems to be related to our moral attitudes toward suicide. This brings us to a discussion about life itself. We claim that the total lack of legal protection for physician-assisted suicide from international organizations and most countries in the world lies in a philosophical assumption that supports much of our (...) common beliefs about what life really is. This assumption states that life must be thought of as not belonging exclusively to the individual. We argue that this assumption is a misconception that can be heard in the debate on suicide. Consequently we endorse a different conception of life which tends to favor a pro-choice stance towards suicide and assisted death in general. This position takes the patient’s decision about when to die more seriously. We conclude that there is no reason why physician-assisted suicide does not deserve legal protection as an individual right to die under international law. (shrink)

In the age of Big Data, companies and governments are increasingly using algorithms to inform hiring decisions, employee management, policing, credit scoring, insurance pricing, and many more aspects of our lives. Artificial intelligence systems can help us make evidence-driven, efficient decisions, but can also confront us with unjustified, discriminatory decisions wrongly assumed to be accurate because they are made automatically and quantitatively. It is becoming evident that these technological developments are consequential to people’s fundamental human rights. Despite increasing (...) attention to these urgent challenges in recent years, technical solutions to these complex socio-ethical problems are often developed without empirical study of societal context and the critical input of societal stakeholders who are impacted by the technology. On the other hand, calls for more ethically and socially aware AI often fail to provide answers for how to proceed beyond stressing the importance of transparency, explainability, and fairness. Bridging these socio-technical gaps and the deep divide between abstract value language and design requirements is essential to facilitate nuanced, context-dependent design choices that will support moral and social values. In this paper, we bridge this divide through the framework of Design for Values, drawing on methodologies of Value Sensitive Design and Participatory Design to present a roadmap for proactively engaging societal stakeholders to translate fundamental human rights into context-dependent design requirements through a structured, inclusive, and transparent process. (shrink)

Responsibility for Human Rights provides an original theoretical analysis of which global actors are responsible for human rights, and why. It does this through an evaluation of the different reasons according to which such responsibilities might be assigned: legalism, universalism, capacity and publicness. The book marshals various arguments that speak in favour of and against assigning 'responsibility for human rights' to any state or non-state actor. At the same time, it remains grounded in an (...) incisive interpretation of the world we actually live in today, including: the relationship between sovereignty and human rights, recent events in 'business and human rights' practice, and key empirical examples of human rights violations by companies. David Karp argues that relevantly public actors have specific human rights responsibility. However, states can be less public, and non-state actors can be more public, than might seem apparent at first glance. (shrink)

In this article I explore the possibilities of experimentation as a non-foundational praxis for introducing novel ways of being into existence. Beginning with a discussion, following Bataille, of the excess of any thought, I argue that any action in the world is necessarily uncertain. Using the insights of Derridean deconstruction combined with Badiousian truth procedure I argue that experimentation offers a means for acting from this uncertain position. Experimentation takes advantage of the play and uncertainty of our understanding of the (...) world as a means of moving towards more progressive political positions. Normal 0 false false false EN-IE X-NONE X-NONE /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin-top:0cm; mso-para-margin-right:0cm; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0cm; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi; mso-fareast-language:EN-US;}. (shrink)

Can there be a "reflexive" or presuppositional, reasonably non-rejectable grounding of a Forst-type right to justification, or of a meaningful form of constitutive discursive standing? The paper argues that this is not so, and this for reasons that reflect more general limitations of presuppositional arguments for relevantly contested conclusions. To this end, the paper critically engages Forst's "reflexive" argument for human rights. It also considers O'Neill's presuppositional attempt to defend a form of cosmopolitanism, as well as the attempt (...) to anchor constructivist conclusions in the meaning of the word "reasonable". (shrink)

An innovative book that provides fresh insights into the neglected field of remedies in both international and domestic human rights law. Providing an overarching two-track theory, it combines remedies to compensate and prevent irreparable harm to litigants with a more dialogic approach to systemic remedies. It breaks new ground by demonstrating how proportionality principles can improve remedial decision-making and avoid reliance on either strong discretion or inflexible rules. It draws on the latest jurisprudence from the European and Inter-American (...) Courts of Human Rights and domestic courts in Australia, Canada, India, New Zealand, Hong Kong, South Africa, the United Kingdom and the United States. Separate chapters are devoted to interim remedies, remedies for laws that violate human rights, damages, remedies in the criminal process, declarations and injunctions in institutional cases, remedies for violations of social and economic rights and remedies for violations of Indigenous rights. (shrink)

Health care workers with needlestick exposures to patients' blood often request a test of the patient for evidence of infection with human immunodeficiency virus. If the patient refuses the test, a conflict develops between the interests of the health care worker and those of the patient. Traditional approaches to this dilemma attempt to balance the rights or utilities of abstract patients and health care workers. While these approaches have the advantage of offering clear guidelines in advance of conflict, (...) the interests of the actual participants may differ from those used to create the guidelines. In nonmedical settings, conflicts are often resolved efficiently through negotiation and monetary exchanges. Although negotiated monetary settlements between health care workers and patients may be an impractical way to resolve medical conflicts, models developed from these perspectives provide insights into the individual interests of physicians and patients. Changing existing rules about medical record documentation, or increasing the penalties for the misuse of medical information, may satisfy the interests on both sides of the conflict and so represent integrative bargaining solutions. Even so, as the relationship between health care workers and their patients evolves, more explicit strategies for negotiation may become a reasonable solution to the problem of conflict. (shrink)

While it is generally assumed that large corporations today give rhetorical support for basic human rights in public relations documents, skepticism continues toarise about the behavior of these firms. Do company actions support their rhetoric? This paper provides the initial analysis of our study of both rhetoric and practice regarding human rights in a small sample of large U.S. firms. At this point in the analysis, UNGC membership does not appear to have much influence on corporate (...) rhetoric, but may be partially correlated with several measures of corporate performance on human rights issues. (shrink)

This article advocates for a hermeneutic model for children-AI interactions in which the desirable purpose of children’s interaction with artificial intelligence systems is children's growth. The article perceives AI systems with machine-learning components as having a recursive element when interacting with children. They can learn from an encounter with children and incorporate data from interaction, not only from prior programming. Given the purpose of growth and this recursive element of AI, the article argues for distinguishing the interpretation of bias within (...) the artificial intelligence ethics and responsible AI discourse. Interpreting bias as a preference and distinguishing between positive and negative bias is needed as this would serve children's healthy psychological and moral development. The human-centric AI discourse advocates for an alignment of capacities of humans and capabilities of machines by a focus both on the purpose of humans and on the purpose of machines for humans. The emphasis on mitigating negative biases through data protection, AI law, and certain value-sensitive design frameworks demonstrates that the purpose of the machine for humans is prioritized over the purpose of humans. These top–down frameworks often narrow down the purpose of machines to do-no-harm and they miss accounting for the bottom-up views and developmental needs of children. Therefore, applying a growth model for children-AI interactions that incorporates learning from negative AI-mediated biases and amplifying positive ones would positively benefit children’s development and children-centric AI innovation. Consequently, the article explores: What challenges arise from mitigating negative biases and amplifying positive biases in children-AI interactions and how can a growth model address these? To answer this, the article recommends applying a growth model in open AI co-creational spaces with and for children. In such spaces human–machine and human–human value alignment methods can be collectively applied in such a manner that children can become sensitized toward the effects of AI-mediated negative biases on themselves and others; enable children to appropriate and imbue top-down values of diversity, and non-discrimination with their meanings; enforce children’s right to identity and non-discrimination; guide children in developing an inclusive mindset; inform top-down normative AI frameworks by children’s bottom-up views; contribute to design criteria for children-centric AI. Applying such methods under a growth model in AI co-creational spaces with children could yield an inclusive co-evolution between responsible young humans in the loop and children-centric AI systems. (shrink)

This book brings together two of the most powerful and relevant philosophical critiques of human rights: the post-colonialist and the post-Althusserian, its balanced internal structure not just throwing these two critiques together, but actually forcing them to enter into confrontation and dialogue. The book is organised in three parts: at each end, the post-colonialist and the post-Althusserian critiques are represented by some of their main thinkers, while in the middle, an American intermezzo functions as a genuine Derridian supplement: (...) always already contaminating the purity of the two theoretical schools, preventing their enclosure and, hence, fuelling and complicating further their mutual confrontation. As in any authentic dialogue, the introduction and the conclusion each claim victory for one of the sides by changing the very terms and rules of the dialogue, picturing it as a confrontation between emancipatory universalism and inefficient particularism, or as a split between hypocrisy and truth. (shrink)

The United Nations Guiding Principles on Business and Human Rights, resulting from the work of John Ruggie and his team, largely depend on state action and corporate good will for their implementation. One increasingly popular way for states to prevent and redress violations of human rights committed by companies outside their country of registration is to adopt measures with extraterritorial implications, some of which are presented in the article, or to assert direct extraterritorial jurisdiction in specific (...) instances. Some United Nations human rights bodies and non-governmental organisations are clearly supporting the use of extraterritoriality and have argued that international human rights law places an obligation on states to embrace extraterritoriality so as to better control the activities of companies registered on their territories. In this context, the article aims to determine whether extraterritoriality is the magic potion that will help enhance corporate accountability for human rights violations committed overseas. The article explores whether such obligation exists and, beyond this, whether extraterritoriality should be further encouraged. (shrink)

This article explores an alternative to the established dichotomy between philosophical accounts of human rights, characterized by a foundationalist tendency, and political accounts of human rights, which aspire to be non-foundationalist. I argue that in order to justify human rights practice, political accounts of human rights cannot do without the support of theoretical foundations, although not necessarily of the natural-law variety. As an alternative to natural-law metaphysics, a deflationary theory of human (...) rights, based on a deflationary account of truth, is put forward. Starting from a distinction between ‘extreme’ and ‘moderate’ forms of deflationism, this article defends a constructivist theory of human rights grounded on the Humean notion of conventionalism. This innovative approach to human rights provides political conceptions of human rights with the foundations they need, but are currently lacking. (shrink)

The human rights discourse is vitiated by its tendency to reification, a tendency manifest in an ideologically motivated failure to take the reasons for human rights seriously. When a set of rights fall short, in range or strength, of the reasons adduced for them, any claim to the universality and priority of the rights in question is open to the charge of falsification and reification. Such a claim invites immanent critique insofar as a (...) class='Hi'>human rights discourse fails to take its own reasons seriously by working out a set of rights commensurate with them. Further critique is necessary if the human rights concept as such can be shown to be incapable of living up to the best reasons for human rights, in the shape, the author argues, of agency-based reasons. These kinds of critique, especially the latter, can serve as an antidote to the reifying tendency of the human rights discourse. (shrink)

A. Belden Fields invites people to think more deeply about human rights in this book in an attempt to overcome many of the traditional arguments in the human rights literature. He argues that human rights should be reconceptualized in a holistic way to combine philosophical, historical, and empirical-practical dimensions. Human rights are viewed not as a set of universal abstractions but rather as a set of past and ongoing social practices rooted in (...) the claims and struggles of peoples against what they consider to be political, economic, or social domination. By aptly showing how a people’s fight for recognition is often closely tied to rights claims, Fields argues that these connections to identity can help bridge the gulf between universalistic and cultural relativistic arguments in the human rights debate. (shrink)

Human rights are a suspect project – this seems the only sensible starting point today. This suspicion, however, is not absolute and the desire to preserve and reform human rights persists for many of us. The most important contemporary critiques of human rights focus on the problematic consequences of the desire for universal rights. Some defenders of human rights accept elements of this critique in their reformulations, but opponents remain wary of (...) the desire to think and act in human rights terms because of their limitations as a political ethics. Yet, we hesitate to abandon human rights. In this article, I look at the political critique of human rights in greater detail. I argue that an agonistic account drawing on the work of William Connolly and Bonnie Honig offers the best response to the most important contemporary critiques of human rights, and a clearer account of what it means to claim that human rights do valuable work. The key developments of this agonistic view of human rights are its focus on the ambiguity of ‘humanity’ as a political identity and the challenge to legitimate authority and membership that new rights claims make. In the end, human rights are defended as a universal political ethos focused on the pluralization and democratization of global politics. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and (...) informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

In 2020, the Maldives instituted a transitional justice process to address decades of systematic human rights abuses including the widespread use of arbitrary arrest and detention, torture, and the forced depopulation of entire island communities. While the country’s decision to confront its violent past is not unusual, the institution it has established to undertake that task is. Rather than institute a truth and reconciliation commission (TRC), refer cases to its Human Rights Commission, or undertake criminal trials (...) in its domestic judicial system, the Maldives has taken the unprecedented step of establishing a temporary Ombudsperson’s Office for Transitional Justice (OTJ). Comparing the OTJ to national human rights institutions and TRCs, this article examines how and why the Maldives’ transitional justice process has taken this unusual form. It suggests that the OTJ represents a new attempt to address the full range of human rights abuses, including violations of social and economic rights, perpetrated by repressive regimes. (shrink)

Business ethics should include illicit businesses as targets of investigation. For, though such businesses violate human rights they have been largely ignored by business ethicists. It is time to surmount this indifference in view of recent international efforts to define illicit businesses for regulatory purposes. Standing in the way, however, is a meta-ethical question as to whether any business can be declared unqualifiedly immoral. In support of an affirmative answer I address a number of counter-indications by comparing approaches (...) to organized crime and to corporate crime, comparing the ethical critique of businesses studied in business ethics and those socially banned, and comparing the business ethics assumption as to businesses’ ethicality to societal ethical neutrality regarding war-related businesses. My conclusion: to help advance respect for human rights, business ethicists should apply their expertise to the task of defining illicit businesses. (shrink)

Challenges to the exercise of the basic socio-economic rights of half the global population give rise to some of the most pressing issues today. This timely book focuses on world poverty, providing a systematic exposition of the evolving legal responsibility of the international community of states to cooperate in addressing the structural obstacles that contribute to this injustice. This book analyzes the approach, contribution, and current limitations of the international law of human rights to the manifestations of (...) world poverty, inviting the reader to rethink human rights, and, in particular, the framing of responsibilities that are essential to their contemporary protection. (shrink)

The article deals with the question how transnational corporations can bear direct responsibility for human rights abuses they commit by analysing the deficiencies of the current international legal background with respect to human rights and transnational corporations, and the solutions offered by national and regional legal tools. By establishing that current international law is incapable of reducing or compensating for governance gaps, the case law analysis shows that the litigation system under the Alien Tort Claims Act (...) in the United States and ATCA-like litigation possibility in the European Union present a feasible alternative to international law in the field of human rights protection when abuses are committed by transnational corporations. (shrink)

This paper describes the reparations programs implemented in Chile from 1990 to 2004. These programs target the victims of human rights violations committed during the military regime. These include the relatives of the missing and executed persons; people who were dismissed from their jobs for political motives; peasants who participated in land reform and were expelled from the land for political reasons; and Chilean exiles returning to the country. Political prisoners and torture victims were considered only in 2003. (...) The creation of the Commission for Political Imprisonment and Torture was followed by a law which provides pensions to political prisoners and torture victims identified by the Commission. Created with different kinds of victims in mind, these programs were based on pensions, social services, educational benefits, and public recognition of the violations of the victims’ rights, monuments, sites of memory, and health assistance, mainly in the form of mental health services. The Program for Reparation and Integral Health Assistance for Victims of Human Rights Violations, created in 1991 and reinforced by a law at the end of 2004, has been the reparation measure for all kinds of victims of human rights violations, including third-generation relatives. (shrink)

This article presents a case for human rights feminism as providing us with an effective, but too often under-recognized model for achieving equality in our society. From out of the context of recent feminism, with specific focus on Judith Butler, the author argues that the move to universal human rights is compatible with the critical tradition of identity politics as a means of realizing the goal of gender equality.

The criticism that voluntary codes of conduct are ineffective can be met by giving greater centrality to human rights in such codes. Provided the human rights obligations of multinational corporations are interpreted as moral obligations specifically tailored to the situation of multinational corporations, this could serve to bring powerful moral force to bear on MNCs and could provide a legitimating basis for NGO monitoring and persuasion. Approached in this way the human rights obligations of (...) MNCs can be taken to include support for political as well as economic rights. This will go some way towards filling the regulatory gap created by the difficulty of controlling the activities of corporations operating globally. However, such a proposal will require a measure of ‘meta-regulation’ whereby the operations of MNCs are legally required to be sufficiently transparent to create the conditions for effective external moral scrutiny. (shrink)

What grounds human rights? How do we determine that something is a genuine human right? This chapter offers a new answer: human beings have human rights to the fundamental conditions for pursuing a good life. The fundamental conditions for pursuing a good life are certain goods, capacities, and options that human beings qua human beings need whatever else they qua individuals might need in order to pursue a characteristically good human life. (...) This chapter explains how this Fundamental Conditions Approach is better than James Griffin’s Agency Approach as well as Martha Nussbaum’s Central Capabilities Approach. It also shows how it can be compatible with the increasingly popular Political Conceptions of human rights defended by John Rawls, Charles Beitz, and Joseph Raz. (shrink)

This book manuscript, entitled United Nations Human Rights Ethics: For The Greatest Success of the Greatest Number, critically examines most all major normative ethical theories since Socrates and finds Roman Stoic ethics to be the least deficient. It divides ethical theories into popular ones with little academic support, other popular ones that have had such support, and Kantian ethics standing alone as a philosopher's academic ethical philosophy with limited popular support. It criticizes the appropriation of human (...) class='Hi'>rights by the international law profession to the exclusion of moral philosophy, despite the origin of "human rights" in the moral philosopher Rousseau. It blames the inability of moral philosophers to reach a professional consensus on the elements of normative ethics, not the legal profession. It laments both the failure of human rights education to human beings everywhere as requested by the Universal Declaration and the decline in popular support for human rights in favor of nationalism in current history since 2015. It advocates a way of redirecting human right education to people on the ground rather than mainly to law students. Such education has been overtaken by the Rule of Law movement fighting high crimes crimes against humanity unanticipated by the Universal Declaration. It argues for a way for ethicists to get on the same page in teaching elements in ethics and argues forcefully for a positive method for popular human rights education as well as for human rights-based elementary ethical theory. (shrink)