Under the UDHR, all persons have the right to "seek and to enjoy . . . asylum from persecution." From this designation as fundamental followed codification of the right in the 1951 Convention relating to the Status of Refugees and the 1967 Protocol Relating (collectively 'the Convention'), the "centrepiece" of treaties and customary norms that make up international refugee law. It defines and regulates the status and rights of refugees; its purpose is to safeguard the basic (...) rights of persons "outside their country of origin," who have fled due to a legitimate fear of persecution. Fundamentally, it guarantees that asylees and refugees enjoy rights without discrimination; without penalization for illegal territorial entry; and, without expulsion or return to "territories where . . . life or freedom would be threatened on account of . . . race, religion, nationality, membership of a particular social group or political opinion," —or 'non-refoulement'. What follows is background on development of the principle of non-refoulement, evasive US Asylum Cooperative Agreements ('ACAs') and implementing legislation, and the resulting erosion to the right to asylum. (shrink)

We speak of the right to know with relative ease. You have the right to know the results of a medical test or to be informed about the collection and use of personal data. But what exactly is the right to know, and who should we trust to safeguard it? This book provides the first comprehensive examination of the right to know and other epistemic rights: rights to goods such as information, knowledge and (...) truth. These rights play a prominent role in our information-centric society and yet they often go unnoticed, disregarded and unprotected. As such, those who control what we know, or think we know, exert an influence on our lives that is often as dangerous as it is imperceptible. Beginning with a rigorous but accessible philosophical account of epistemic rights, Lani Watson examines the harms caused by epistemic rights violations, drawing on case studies across medical, political and legal contexts. She investigates who has the right to what information, who is responsible for the quality and circulation of information and what epistemic duties we have towards each other. This book is essential reading for philosophers, legal theorists and anyone concerned with the protection and promotion of information, knowledge and truth.. (shrink)

Telling the truth is one of the most respected virtues in medical history and one of the most emphasized in the code of medical ethics. Health care providers are frequently confronted with the dilemma as to whether or not to tell the truth. This dilemma deepens when both choices are critically vicious: The choice is no longer between “right and right” or “right and wrong,” it is between “wrong and wrong.” In the case presented and discussed in (...) this paper, a research team in Saudi Arabia unintentionally uncovered information regarding misattributed paternity. In such a situation and in the context of a tribal cultural system, what should the team do with this information? This case analysis demonstrates the joint application of ethical resources originating from within and outside the Saudi Arabian context. The article analyses the case based on the moral problems involved, relevant medical application, and the impact of such information in the Saudi tribal and Islamic domains. The most pertinent relevant values and secular debates on similar matters are discussed. Finally, the article aims to provide an Islamic dimension of family, fatherhood, and adultery. (shrink)

The concept of ‘geneticization’ has been introduced in the scholarly literature to describe the various interlocking and imperceptible mechanisms of interaction between medicine, genetics, society and culture. It is argued that Western culture currently is deeply involved in a process of geneticization. This process implies a redefinition of individuals in terms of DNA codes, a new language to describe and interpret human life and behavior in a genomic vocabulary of codes, blueprints, traits, dispositions, genetic mapping, and a gentechnological approach to (...) disease, health and the body. This article analyses the thesis of ‘geneticization’. Explaining the implications of the thesis, and discussing the critical refutations, it is argued that ‘geneticization’ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights. (shrink)

The member states of the United Nations Educational, Scientific and Cultural Organization (UNESCO) decided in 2002 that ethics is one of the five priority areas of the organization. This article describes three categories of past and current activities in the ethics of science and technology, in particular bioethics. The first category is the global standard setting with the Universal Declaration on Bioethics and Human Rights as the most recently adopted normative instrument. The second category focuses on capacity building in (...) order to enable member states to apply the provisions of the declarations, through, for example, the establishment of national bioethics committees, the introduction of ethics teaching programs, and drafting of legislation and guidelines. The final category of activities is awareness raising through publications, events, and conferences. The challenges and difficulties UNESCO may face in its various activities are highlighted. (shrink)

In the 1970s “bioethics” emerged as a new interdisciplinary discourse on medicine, health care, and medical technologies, primarily in Western, developed countries. The main focus was on how individual patients could be empowered to cope with the challenges of science and technology. Since the 1990s, the main source of bioethical problems is the process of globalization, particularly neo‐liberal market ideology. Faced with new challenges such as poverty, inequality, environmental degradation, hunger, pandemics, and organ trafficking the bioethical discourse of empowering individuals (...) is no longer sufficient. Global bioethics nowadays is concerned with applying and implementing a universal ethical framework. Islamic bioethics has contributed to creating such framework (exemplified in the UNESCO Universal Declaration on Bioethics and Human Rights) while at the same time it is continuously articulating and interpreting this framework in specific settings and contexts. (shrink)

Five leading thinkers on the concept of 'rights' in an era of rightlessness Sixty years ago, the political theorist Hannah Arendt, deprived of her German citizenship as a Jew and in exile from her country, observed that before people can enjoy any of the 'inalienable' Rights of Man--before there can be any specific rights to education, work, voting, and so on--there must first be such a thing as 'the right to have rights.' The concept (...) received little attention at the time, but in our age of refugee crises and extra-state war, the phrase has become the center of a crucial and lively debate. Here five leading thinkers from varied disciplines, including history, law, and politics, discuss the critical issue of the basis of rights and the meaning of radical democratic politics today. (shrink)

In her influential discussion of the plight of stateless people, Hannah Arendt invokes the ‘right to have rights’ as the one true human right. In doing so she establishes an aporia. If statelessness corresponds not only to a situation of rightlessness but also to a life deprived of public appearance, how could those excluded from politics possibly claim the right to have rights? In this article I examine Jacques Rancière’s response to Arendt’s aporetic (...) account of human rights, situating this in relation to his wider criticism of Arendt’s conception of the political. According to Rancière, Arendt depoliticizes human rights in identifying the human with mere life (zoë) and the citizen with the good life (bios politikos). For, in doing so, she takes the distinction between zoë and the bios politikos to be ontologically given whereas politics is typically about contesting how that distinction is drawn. For Rancière ‘the human’ in human rights does not refer to a life deprived of politics. Rather, the human is a litigious name that politicizes the distinction between those who are qualified to participate in politics and those who are not. In contrast to Arendt, Rancière’s approach enables us to recognize contests over human rights, such as that of the sans papiers, as part and parcel of social struggles that are the core of political life. (shrink)

The concept of ‘geneticization’ has been introduced in the scholarly literature to describe the various interlocking and imperceptible mechanisms of interaction between medicine, genetics, society and culture. It is argued that Western culture currently is deeply involved in a process of geneticization. This process implies a redefinition of individuals in terms of DNA codes, a new language to describe and interpret human life and behavior in a genomic vocabulary of codes, blueprints, traits, dispositions, genetic mapping, and a gentechnological approach to (...) disease, health and the body. This article analyses the thesis of ‘geneticization’. Explaining the implications of the thesis, and discussing the critical refutations, it is argued that ‘geneticization’ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights. (shrink)

States claim the right to choose who can come to their country. They put up barriers and expose migrants to deadly journeys. Those who survive are labelled ‘illegal’ and find themselves vulnerable and unrepresented. The international state system advantages the lucky few born in rich countries and locks others into poor and often repressive ones. In this book, Christopher Bertram skilfully weaves a lucid exposition of the debates in political philosophy with original insights to argue that migration controls must (...) be justifiable to everyone, including would-be and actual immigrants. Until justice prevails, states have no credible right to exclude and no-one is obliged to obey their immigration rules. Bertram’s analysis powerfully cuts through the fog of political rhetoric that obscures this controversial topic. It will be essential reading for anyone interested in the politics and ethics of migration. (shrink)

The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to “mental privacy.” In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised by other (...) well-understood data collection technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics, Helen Nissenbaum’s “contextual integrity” theory. To illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three familiar contexts—healthcare and medical research, criminal justice, and consumer marketing. We argue that by emphasizing what is distinct about brain privacy issues, rather than what they share with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy. (shrink)

In the 1970s “bioethics” emerged as a new interdisciplinary discourse on medicine, health care, and medical technologies, primarily in Western, developed countries. The main focus was on how individual patients could be empowered to cope with the challenges of science and technology. Since the 1990s, the main source of bioethical problems is the process of globalization, particularly neo-liberal market ideology. Faced with new challenges such as poverty, inequality, environmental degradation, hunger, pandemics, and organ trafficking the bioethical discourse of empowering individuals (...) is no longer sufficient. Global bioethics nowadays is concerned with applying and implementing a universal ethical framework. Islamic bioethics has contributed to creating such framework (exemplified in the UNESCO Universal Declaration on Bioethics and Human Rights) while at the same time it is continuously articulating and interpreting this framework in specific settings and contexts. (shrink)

: The member states of the United Nations Educational, Scientific and Cultural Organization (UNESCO) decided in 2002 that ethics is one of the five priority areas of the organization. This article describes three categories of past and current activities in the ethics of science and technology, in particular bioethics. The first category is the global standard setting with the Universal Declaration on Bioethics and Human Rights as the most recently adopted normative instrument. The second category focuses on capacity building (...) in order to enable member states to apply the provisions of the declarations, through, for example, the establishment of national bioethics committees, the introduction of ethics teaching programs, and drafting of legislation and guidelines. The final category of activities is awareness raising through publications, events, and conferences. The challenges and difficulties UNESCO may face in its various activities are highlighted. (shrink)

S. Matthew Liao argues here that children have a right to be loved. To do so he investigates questions such as whether children are rightholders; what grounds a child's right to beloved; whether love is an appropriate object of a right; and other philosophical and practical issues. His proposal is that all human beings have rights to the fundamental conditions for pursuing a good life; therefore, as human beings, children have human rights (...) to the fundamental conditions for pursuing a good life. Since being loved is one of those fundamental conditions, children thus have a right to be loved. Liao shows that this claim need not be merely empty rhetoric, and that the arguments for this right can hang together as a coherent whole. This is the first book to make a sustained philosophical case for the right of children to be loved. It makes a unique contribution to the fast-growing literature on family ethics, in particular, on children's rights and parental rights and responsibilities, and to the emerging field of the philosophy of human rights. (shrink)

The article deals with the constitutional right of a person to apply to court. While construing this constitutionally entrenched right of a person, one analyses the doctrine of the right of a person to apply to court, which was formed in the jurisprudence of the Constitutional Court of the Republic of Lithuania. The right of a person to court is entrenched expressis verbis in Paragraph 1 of Article 30 of the Constitution whereby the person whose constitutional (...) rights or freedoms are violated shall have the right to apply to court. The doctrine of the Constitutional Court derives this right also from the constitutional principle of a state under the rule of law. The right of a person to court is inseparable from other norms and principles of the Constitution, which are equality of rights, the right to compensation of damage, the right to a proper court process, etc. (shrink)

This paper draws upon Hannah Arendt's idea of the 'right to have rights' to critique the current protection gap faced by refugees today. While refugees are protected from refoulement once they make it to the jurisdiction or territory of a state, they face an ever-increasing array of non-entrée policies designed to stymie access to state territory. Without being able to enter a state capable of securing their claims to safety and dignity, refugees cannot achieve the rights (...) which ought to be afforded to them under international law. Drawing upon both legal theory and political philosophy, this paper argues that refugees today, just as the stateless in Arendt’s time, must be afforded the ‘right to have rights’, understood as a right to enter state territory. (shrink)

The emergence of the European Union citizenship agenda has mainly taken place along the evolution of mobility rights, with the goal of creating a pan-European labor market. Mobility undermines the nationally embedded notion of industrial citizenship. Industrial citizenship protects workers’ rights and secures their participation in national political systems. The Europeanization of labor markets severs the relationship between state, territory and citizen on which industrial citizenship has been built, undermining worker collectivism and access to representation. This is legitimated (...) in terms of building market-citizenship, i.e., enabling mobile workers as market actors. However, the way mobility is regulated in the EU has the purpose and effect of weakening collective labor institutions, which also undermines workers’ ability to act as autonomous market actors. The same factors which undermine the industrial citizenship of mobile workers also prevent them from being effective free market agents: i.e., they can neither negotiate nor enforce individual contracts effectively in the face of systematic employer fraud and wage theft. The “Arendtian dilemma” of the “right to have rights” — a dilemma that derives from the claim that rights depend on the existence of a political community, which until now is the territorially exclusive nation-state, rather than universal personhood — emerges as industrial citizenship is internationalized. By disembeddeding workers from host-country industrial relations systems, EU regulation provides the social context in which workers’ rights become alienable. (shrink)

In recent years irregular immigration has attracted increasing scholarly attention. Current academic debate casts the irregular immigrant in the role of the new political subject who acts out a right to have rights and/or as the rightless victim who is subjected to violence and abuse. However, the conception of the irregular immigrant as harbinger of political change and/or victim reifies the persistent dichotomy between inclusion and exclusion. It ignores that irregular immigrants are not by definition excluded from (...) a normal life and that numerous immigrants live in the interstices between full legal inclusion and exclusion without democratic legal order being cast to ruin. The question that underlies this essay is: What concept of law can accommodate the unauthorized presence of immigrants without reducing them to bare life, struggling to survive and/or assigning them a political agency and without taking recourse to the use of force and violence in a zero-tolerance policy? To answer this question, this article draws on what Agamben has coined the potentiality of the law and unpacks Judith Shklar’s idea of different degrees of legalism. (shrink)

Recent years have witnessed an upsurge of political readings of the right to have rights. The gist of the argument is that this right only comes into being in the act of claiming or taking it. At the same time, the political reading suffers from a normative lacuna which is difficult to ignore if right is not to collapse into might. The present article seeks to show that this normative lacuna can be accounted for (...) if one situates the political reading in relation to a certain form of government. Acknowledging Montesquieu’s influence on Arendt’s resort to the principles which guide political action, the article offers a new interpretation of the normative basis of the right to have rights. It argues, first, that this right is democratic, not political, and second, that the principle which sets the right in motion is responsibility, not freedom. (shrink)

After having received little attention over the past decades, one of the least known human rights—the right to enjoy the benefits of scientific progress and its applications—has had its dust blown off. Although included in the Universal Declaration of Human Rights (UDHR) and in the International Covenant on Economic, Social and Cultural Rights (ICESCR)—be it at the very end of both instruments -this right hardly received any attention from States, UN bodies and programmes and academics. (...) The role of science in societies and its benefits and potential danger were discussed in various international fora, but hardly ever in a human rights context. Nowadays, within a world that is increasingly turning to science and technology for solutions to persistent socio-economic and development problems, the human dimension of science also receives increased attention, including the human right to enjoy the benefits of scientific progress and its applications. This contribution analyses the possible legal obligations of States in relation to the right to enjoy the benefits of scientific progress and its applications, in particular as regards health. (shrink)

Major considerations of disability studies—such as provision of care, accommodation for disabled people, and issues surrounding institutionalization—have been consistently marginalized in American bioethical discourse. The right to die, however, stands out as a paradigmatic bioethical debate. Why do advocates for expanding the volition and self-direction of disabled people emerge from the periphery only to help those disabled people who choose death? And why do the majority of people assume an unrealistically low quality of life for those with disabilities? (...) This paper will argue that the dominance of the Western liberal tradition in American culture motivates both these phenomena: by emphasizing individual rights over duties and responsibilities, assuming the isolated and independent rights-bearer as the prototypical person, and evoking an unrealistically atomistic view of human interaction. As an alternative, I offer a framework rooted in feminist ethics that emphasizes context, gives moral weight to human relationships, abandons the problematic ideal of a lone rights-bearer, and emphasizes the mutual vulnerability of embodied individuals. (shrink)

Although principles, as a framework to resolving moral dilemmas are still debated and seem to be in a philosophical quagmire, there are strong arguments that by specification one can resolve case-specific dilemmas in certain areas of bioethics. When it comes to genetic screening and testing however, the problem at the base is a moral disagreement on higher-order principles—such as the status of the embryo and parental issues. No amount of specification can resolve these issues without a dose of relativism. We (...) explore a possibility of agreement on debatable areas specifically in regard to genetics—such as conferring status to the embryo solely for purposes of preventing genetic selection; but it is difficult to see how this can be incorporated into law without extrapolation to other areas. We conclude therefore that the four-principles approach, albeit valuable for expounding opposing views and discussing issues, cannot either alone or by specification, help resolve issues of genetic screening and testing without agreeing on higher order principle. This does not seem to be a possibility in the near future. (shrink)

Rights to do wrong are not necessary even within the framework of interest-based rights aimed at preserving autonomy. Agents can make morally significant choices and develop their moral character without a right to do wrong, so long as we allow that there can be moral variation within the set of actions that an agent is permitted to perform. Agents can also engage in non-trivial self-constitution in choosing between morally indifferent options, so long as there is adequate non-moral (...) variation among the alternatives. The stubborn intuition that individuals have a right to do wrong in some cases can be explained as stemming from a cautionary principle motivated by the asymmetry between the risk of wrongly interfering and that of refraining from interfering. (shrink)

Scholars have long recognized the importance of liberty in Milton's early prose, but they tend to center their analysis on republicanism. Although he would go on to express republicanism, Milton's early tracts tie liberty to English political and legal traditions rather than classical ones. Milton, in his early tracts, utilizes the language of the ancient constitution and the common law as he centers liberty on the property and bodies of English citizens, thus framing liberty in distinctly English terms. Additionally, (...) Milton's early prose accepts the power of the monarch, revealing Milton's initial commitment to the existing political structure. (shrink)

The concept of ‘geneticization’ has been introduced in the scholarly literature to describe the various interlocking and imperceptible mechanisms of interaction between medicine, genetics, society and culture. It is argued that Western culture currently is deeply involved in a process of geneticization. This process implies a redefinition of individuals in terms of DNA codes, a new language to describe and interpret human life and behavior in a genomic vocabulary of codes, blueprints, traits, dispositions, genetic mapping, and a gentechnological approach to (...) disease, health and the body. This article analyses the thesis of ‘geneticization’. Explaining the implications of the thesis, and discussing the critical refutations, it is argued that ‘geneticization’ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights. (shrink)

The practice of unrestricted universal suffrage is unjust. Citizens have a right that any political power held over them should be exercised by competent people in a competent way. Universal suffrage violates this right. To satisfy this right, universal suffrage in most cases must be replaced by a moderate epistocracy, in which suffrage is restricted to citizens of sufficient political competence. Epistocracy itself seems to fall foul of the qualified acceptability requirement, that political power must be (...) distributed in ways against which there are no qualified objections. However, it is less intrinsically unjust than democracy with universal suffrage, and probably produces more just outcomes. Thus epistocracy is more just than democracy, even if not perfectly just. (shrink)

UNESCO is an intergovernmental organization with 193 Member States. It is concerned with a broad range of issues regarding education, science and culture. It is the only UN organisation with a mandate in science. Since 1993 it is addressing ethics of science and technology, with special emphasis on bioethics. One major objective of the ethics programme is the development of international normative standards. This is particularly important since many Member States only have a limited infrastructure in bioethics, lacking expertise, (...) educational programs, bioethics committees and legal frameworks. UNESCO has recently adopted the Universal Declaration on Bioethics and Human Rights. The focus of current activities is now on implementation of this Declaration. Three activities are discussed that aim at improving and reinforcing the ethics infrastructure in relation to science and technology: the Global Ethics Observatory, the Ethics Education Programme and the Assisting Bioethics Committees project. (shrink)

"Is higher education a right, or a privilege? This author argues that all citizens in a free and open society should have an unconditional right to higher education. Such an education should be costless for the individual and open to everyone regardless of talent. A readiness and willingness to learn should be the only qualification. It should offer opportunities that benefit citizens with different interests and goals in life. And it should aim, as its foundational moral purpose, (...) to help citizens from all walks of life live better, freer lives. Using concepts and ideas from liberal political philosophy the author argues that access to educational goods and services is something to which all citizens have a right over a full life. Such goods, it is argued, play a key role in helping citizens realize self-determined goals. Higher education should therefore be understood a basic social institution responsible for ensuring that all citizens can access such 'autonomy-supporting' goods. The book examines the implication of this justification of the right to higher education for questions of educational justice, political authority, distributive justice, civic education, and personal autonomy"--. (shrink)

Readers of Hannah Arendt’s now classic formulation of the statelessness problem in her 1951 book The Origins of Totalitarianism abound at a moment when the number of stateless peoples worldwide continues to rise exponentially. Along with statelessness, few concepts in Arendt scholarship have spawned such a volume of literature, and perhaps none have provoked as much interest outside of the field of philosophy, as ‘the right to have rights.’ Interpreting this enigmatic term exposes the heart (...) of our beliefs about the nature of the political and has important consequences for how we practice politics on a global scale because it implicitly takes plural human beings, and not the citizen, as its subjects. Arendt’s conceptualization of this problem remains unsurpassed in its diagnosis of the political situation of statelessness, as well as its intimate description of the human cost of what she refers to as ‘world loss,’ a phenomenon that the prevailing human rights and global justice discourse does not take into account. And yet, as an alternative framework for thinking about global politics, the right to have rights resists easy interpretation, let alone practical application. (shrink)

This book explores how traditional theories of economic justice, both from the libertarian right and the egalitarian left, have failed to appreciate the objection against exploitative behavior that would be possible through the exercise of property rights. This failure also underlies the recent plea for a so-called unconditional basic income.

Perhaps I am wrong to take this article personally, but when the authors refer to Cassandras “voicing concern about a post-Roe degradation of pregnant persons’ right to chart their own medical cour...

Hunger strikes are commonly repressed in prison and seen as disruptive, coercive, and violent. Hunger strikers and their advocates insist that incarcerated persons have a right to hunger strike, which protects them against repression and force-feeding. Physicians and medical ethicists generally ground this right in the right to refuse medical treatment; lawyers and legal scholars derive it from incarcerated persons’ free speech rights. Neither account adequately grounds the right to hunger strike because both misrepresent (...) the hunger strike as noncoercive and nonviolent. I articulate an alternative, dual account of the right to hunger strike. On the remedial argument, the right to hunger strike should be legally protected as a right to petition for redress, in light of incarcerated people’s structural vulnerability to abuse and given inadequate grievance mechanisms. The constructive argument derives the right to hunger strike from the right to resist oppression and stresses the normative permissibility of the use of coercive tactics to defend one’s liberty interests in the face of carceral oppression. -/- . (shrink)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the (...) patient’s relatives who, without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (shrink)

Are there moral rights to do moral wrong? A right to do wrong is a right that others not interfere with the right-holder’s wrongdoing. It is a right against enforcement of duty, that is a right that others not interfere with one’s violation of one’s own obligations. The strongest reason for moral rights to do moral wrong is grounded in the value of personal autonomy. Having a measure of protected choice (that is a (...) right) to do wrong is a condition for an autonomous life and for autonomous moral self-constitution. This view has its critics. Responding to these objections reveals that none refute the coherence of the concept of a ‘moral right to do moral wrong’. At most, some objections successfully challenge the weight and frequency of the personal autonomy reasons for such rights. Autonomy-based moral rights to do moral wrong are therefore conceptually possible as well as, at least on occasion, actual. (shrink)

Medical interventions such as methadone treatment for drug addicts or “chemical castration” for sex offenders have been used in several jurisdictions alongside or as an alternative to traditional punishments, such as incarceration. As our understanding of the biological basis for human behaviour develops, our criminal justice system may make increasing use of such medical techniques and may become less reliant on incarceration. Academic debate on this topic has largely focused on whether offenders can validly consent to medical interventions, given (...) the coercive environment of the criminal justice system. Both sides in this debate share the assumption that administering medical interventions to offenders without their valid consent would be unethical. Recently, Thomas Douglas has mounted a formidable challenge to this “consent requirement”. Essentially, his argument rests on a comparison between prison and medical interventions. Douglas asks: if the state is entitled to impose a prison sentence on a criminal without the criminal’s consent, why is consent required for the imposition of a medical intervention? The most obvious way of defending the consent requirement against Douglas’s challenge appeals to the fact that incarceration merely interferes with the right to free movement, but medical interventions interfere with the right to bodily integrity. This argument rests on what Douglas calls the “robustness claim”—the claim that the right to bodily integrity is more robust than the right to freedom of movement. In other words, the right to freedom of movement loses its protective force in a wider range of circumstances than the right to bodily integrity. Douglas’s article seeks to undermine the robustness claim, by arguing that neither case-based intuitions, nor theoretical considerations support this claim. In this article, I will attempt to raise some doubts about Douglas’s challenge to the consent requirement and the robustness claim. (shrink)

This article examines how Hannah Arendt’s idea of a “right to have rights” could travel in the Americas. It offers a reading of the right to have rights that foregrounds the right to land as a basic right. This reading emerges through an attention to contemporary Indigenous social movements and political philosophy. Taken together, this examination and reading ask justice-oriented actors to support land back movements as part of a broader practice of (...) defending human rights and situating those rights within a responsibility to land. (shrink)

The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This (...) book considers the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media. (shrink)

The question that I address in this paper is whether there is a right to privacy. It is not the question whether in the United States there is a legal right to privacy or, more particularly, a constitutional right to privacy. There are any number of ordinary legal rights and specific constitutional rights that might be so described, and the U.S. Supreme Court has referred also to a generic “right to privacy” that is implicit (...) in the U.S. Constitution. Nor is the question that I address whether persons have a moral claim to privacy that others ought to respect. I assume that in many circumstances, respecting a person's claim to privacy is productive of the good and, if so, that the claim ought to be respected. Rather, my question is whether persons have a right to privacy not dependent on positive law, such that it ought ordinarily to be respected without regard to the consequences, good or bad, simply because it is right. (shrink)

There is a common view in medical ethics that the patient's right to be informed entails, as well, a correlative right not to be informed, i.e., to waive one's right to information. This paper argues, from a consideration of the concept of autonomy as the foundation for rights, that there can be no such ‘right’ to refuse relevant information, and that the claims for such a right are inconsistent with both deontological and utilitarian ethics. (...) Further, the right to be informed is shown to be a mandatory right (though not a welfare right); persons are thus seen to have both a right and a duty to be informed. Finally, the consequences of this view are addressed: since the way in which we conceptualize our problems tends to determine the actions we take to resolve them, it is important properly to conceptualize patients' requests not to be informed. There may be many reasons for acting in accord with such a request, but it is a mistake to conceptualize one's act as ‘respecting a right possessed by persons’. Keywords: medical ethics, informed consent, autonomy, information-waivers, rights, obligations CiteULike Connotea Del.icio.us What's this? (shrink)

Institutional review boards (IRBs) have a reputation for impeding research. This reputation is understandable inasmuch as many studies are poorly designed, exploit participants, or do not ask a relevant question , and it is entirely proper that IRBs should reject such proposals. However, IRBs also frequently reject or tamper with perfectly sound and relevant studies in the name of protecting participants from harm, in accordance with the widely accepted message that “clinical research is justified only when participants are protected (...) from excessive risks”. Here, I argue that IRBs should never reject a study because it poses too high a risk to participants, and that their role should be confined to ensuring that risks and any potential benefits are fully explained to potential participants. Everyone should have the right to participate in research without paternalistic decisions about risk being made on their behalf. (shrink)

This paper provides an answer to the question why birth parents have a moral right to keep and raise their biological babies. I start with a critical discussion of the parent-centred model of justifying parents’ rights, recently proposed by Harry Brighouse and Adam Swift. Their account successfully defends a fundamental moral right to parent in general but, because it does not provide an account of how individuals acquire the right to parent a particular baby, it (...) is insufficient for addressing the question whether and why there is a right to parent one’s biological child. Such a right is important because, in its absence, fairness towards adequate prospective parents who are involuntarily childless would demand a ‘babies redistribution’; moreover, in societies with entrenched histories of injustice there may be reasons of fairness for shuffling babies amongst all recent parents. I supplement the Brighouse-Swift account of fundamental parental rights by an account of how adequate parents acquire the right to parent their biological babies. I advance two arguments to this conclusion: by the time of birth, the birth parents will have already shouldered various burdens in order to bring children into existence, and are likely to have formed an intimate relationship with the future baby. Denying birth parents who would make at least adequate parents the right to keep their baby would be unfair to them and would destroy already formed parent-baby relationships which, I assume, are intrinsically valuable. (shrink)

The right to withdraw from research without penalty is well established around the world. However, it has been challenged in some corners of bioethics based on concerns about various harms—to participants, to scientific integrity, and to research bystanders—that may stem from withdrawal. These concerns have become particularly salient in emerging debates about the ethics of controlled human infection (CHI) studies in which participants are intentionally infected with pathogens, often in inpatient settings with extensive follow‐up. In this article, I (...) provide support for preserving the right to withdraw from research without penalty and demonstrate that it is also typically justified in the specific context of CHI studies. The right is well aligned with individual freedoms outside the research setting, where autonomous individuals are permitted to engage in behaviors that will foreseeably cause them harm; where they cannot be compelled to satisfy contracts for their services, nor penalized for failure to do so; and where their behavior is not constrained by public health authorities except in extreme circumstances. These freedoms are supported by U.S. law, as well as by ethical analysis that is more globally relevant. The problems associated with the right to withdraw, however, remain. The best approach to addressing them is not to restrict the right but rather to avoid initiating research when withdrawal would be especially problematic. If research proceeds, steps can still be taken to minimize participant withdrawal without infringing the right. Investigators can avoid participant surprise through informed consent focused on a study’s most burdensome aspects and promote study completion through financial incentives. Should participants nonetheless seek to withdraw, investigators may attempt to persuade them not to do so by encouraging consideration of the range of potential harms that may result. Researchers conducting CHI studies and other research from which withdrawal might be especially problematic should prepare for the possibility of participant withdrawal, respect participant requests to withdraw without penalty, and incorporate various measures to avoid such requests. (shrink)

The “best-medical-interests” standard for reporting findings does not go far enough. Research subjects have a right to know about any comprehensible piece of information about them that is generated by research in which they are participating. An even broader standard may sometimes be appropriate: if subjects agree to accept information that they may not understand, then all information may be disclosed.