Carol Pateman has said that the public/private distinction is what feminism is all about. I tend to be sceptical about categorical pronouncements of this sort, but this book is a work of feminist political philosophy and the public/private distinction is what it is all about. It is motivated by the belief that we lack a philosophical conception of privacy suitable for a democracy; that feminism has exposed this lack; and that by combining feminist analysis with recent developments in political (...) philosophy, we can meet the philosophical and political need for a distinctively democratic conception of privacy. This book then, is an effort to sketch and defend such a conception of privacy. It aims to show that while some conceptions of privacy are inconsistent with democracy, others are not. Indeed, the book asserts, the belief that privacy can be valuable and that it can justify basic legal rights, is implicit in a democratic conception of persons as free and equal beings, and a democratic conception of politics as the self-governing, or regulating, activity of such individuals. Just as we can and should reject undemocratic conceptions of the suffrage in favour of democratic ones, so the book maintains, we can and must reject undemocratic conceptions of privacy in favour of ones that reflect the moral equality of men and women, and a commitment to democratic forms of government. Democracy is often described as government by and for the people. On such a view, democracy is a political regime which can be contrasted with monarchies or aristocracies on the one hand, or with theocracies and despotisms on the other. By contrast with the former, it is a form of government that views individuals as citizens and as equal members of the agency which authorizes the use of political power. By contrast with the latter, it is a form of government whose purposes and aims are established by the common interests of individuals, conceived as free and equal citizens. It is my contention that there is a plausible and attractive conception of privacy implicit in this view of democracy. Hence, I show that individuals have fundamental interests in privacy because privacy enables them to participate in politics freely and as the equal of others and, beyond that, to lead lives that they can each affirm to be reasonable, valuable and right. As I think that the ideal of democratic government is properly associated with this latter and broader goal, as well as with the former one, I call my account of privacy a democratic conception of privacy to signal its connection to a particular ideal of politics, and to the conception of persons that makes this ideal a convincing and inspiring one. As this is a work of political philosophy, however, no effort is made to address the legal merits of competing accounts of the right to privacy, or to resolve legal dispute about the content and justification of particular constitutional rights in the United States. Thus, while I use Supreme Court decisions and works of legal theory to illustrate and support my arguments, my use of these materials is governed by philosophical concerns and my conclusions, therefore, are strictly of a philosophical, not a legal, nature. The book is divided into four chapters, moving from feminist criticisms of privacy to an engagement with the philosophical literature on privacy and an account of the right to privacy in a democratic society. It proceeds as follows. In Chapter 1, I examine feminist concerns about privacy, through a close reading of the work of Catherine MacKinnon. I argue that MacKinnon persuasively shows that protection for privacy has frequently licensed the coercion and subjection of women, and that her arguments are supported both by feminist scholarship, key Supreme Court decisions, and by familiar conceptions of privacy and equality. However, I argue, these criticisms do not imply that privacy, like slavery, can never be democratic, because wholly inconsistent with the equality of individuals. Rather, feminist criticisms of privacy suggest that privacy, like the suffrage, can be necessary to the equality of women and can have a legitimate and important place in a democratic society. In Chapter 2, I examine the philosophical literature on privacy in light of the need to distinguish democratic from undemocratic accounts of its nature and value. This literature, I show, can help us to provide an account of privacy that is sensitive both to its inegalitarian aspects and to its importance for a democratic commitment to the freedom and equality of women. However, I argue, we cannot embrace current philosophical accounts of privacy uncritically, because to a striking extent they are, themselves, indifferent to the ways that privacy has licensed sexual inequality. Thus, in Chapter 2, I set about interpreting privacy as a moral and political value, in light of the strengths and weaknesses of the philosophical literature on privacy. Their strength is that they show that there are many reasons for caring about privacy, or many ways in which we might define it as a democratic value. Their weakness is that they tend to assume that we must choose amongst these different conceptions of privacy, in order to provide a philosophically cogent account of privacy. This, I show, is a mistake and one that can be remedied by remembering that a commitment to the equality of individuals requires us to acknowledge the reasonable differences in value and interest that may characterize their relations in a democracy. When we do so, I show, it is possible to define privacy in terms of its protection for self-definition, intimacy and confidentiality, without having to choose between the three of them. For individuals may legitimately disagree about the differences between privacy and other values, even while holding that privacy is a distinctive and important democratic good; and they may also disagree about the importance of privacy compared to other goods, such as equality, without denying that self-definition, intimacy and confidentiality can be morally and politically desirable in a democracy. In Chapter 2, therefore, I show that we can provide a philosophically adequate account of what privacy is and why it is valuable without supposing that privacy is always sexually egalitarian, or denying that it has a distinctive place in a democratic conception of value. Chapter 3 then extends this account of privacy, by considering the justification for a legal right to privacy. Just as we cannot provide a democratic conception of privacy without attending to the different, though equally valid, concerns that individuals may have so, I show, we cannot provide a democratic account of privacy rights if we forget that individuals can, quite reasonably, differ in the importance that they attach to privacy. The result, I argue, is that we can distinguish two main reasons for protecting privacy by right in a democracy, the one personal and the other political. Whereas the former emphasizes the importance of self-definition, intimacy and confidentiality to the personal freedom and equality of individuals, the latter emphasizes their importance to their prospects for voluntary and equal participation in the processes of collective choice and deliberation that define a democratic government. These two justifications of privacy rights reflect the fact that in a democracy the personal can be political, as feminists have insisted, but need not be in order to merit protection by right. Indeed, I argue, we can distinguish democratic from undemocratic accounts of the right to privacy in this way: for whilst the former acknowledge the variety of individuals’ interests in personal and collective choice, the latter either collapse the political into the personal, or assume that the legitimate claims of individuals are merely a function of collective needs, interests and values. Neither of these is consistent with familiar assumptions about the nature and justification of democratic institutions and rights, nor can they be reconciled with a commitment to sexual equality. Thus, I conclude, though the fact that there are different justifications for privacy rights in a democracy means that individuals may legitimately disagree over the content and justification of basic rights, it is wrong to confuse democratic debate with moral or conceptual confusion and so, arbitrarily, to truncate our accounts of privacy, equality and democracy. Finally, in Chapter 4, I test and develop these claims by examining the justification for abortion rights in a democracy. I argue that women have legitimate interests in abortion, as well as in bearing children, because they have fundamental, and legitimate, interests in privacy and equality. Although safe and legal abortion is necessary to sexual equality, as feminists claim, I show that we can provide a convincing and democratic account of women’s claims to abortion only if we recognize women’s interests in self-definition, intimacy and confidentiality. This is because women have both personal and political interests in abortion and we will be unable adequately to identify these if we overlook their interests in privacy. Indeed, I show, the difference between democratic and undemocratic solutions to conflict over abortion lies precisely in this: that whereas the former acknowledge the importance of privacy to the personal and political equality of women, the latter overlook or deny this. As a result, the latter license both mandated abortions, although women have legitimate interests in bearing and raising children, and prohibitions on abortion that cannot be reconciled with the freedom and equality of women. That is not to say that abortion is not a politically significant matter, or that we can resolve moral conflict over abortion simply by giving women a legal right to abortion. Neither is the case. However, the chapter shows, in a democracy individuals are entitled to make morally and politically controversial decisions for themselves not simply because this is expedient or useful, but because this is right. To overlook this feature of democracy, I argue, is to make moral and political conflict utterly intractable by democratic means. Thus, while controversy over abortion has been held to show that privacy is an incoherent and undemocratic right, this chapter argues that it shows the reverse: for controversy over abortion makes clear that privacy is essential to democracy, and why this should be so. This overview of the book, I hope, makes clear that its concerns are methodological as well as substantive, and moral as well as political. Thus, its central methodological claim is that we cannot reconcile privacy with the equality of individuals unless we make a deliberate effort to do so. Its central moral and political claims are that privacy is compatible with the equality of individuals, and sufficiently important to the latter that, in a democracy, the privacy of individuals merits legal protection by right. However, this summary of the book also exposes its limitations. Chief amongst these, I fear, is that it provides no sustained discussion of the place of property on a democratic conception of privacy, and that the latter, itself, is rather a broad preliminary sketch than a polished and detailed portrait. I regard these limits on the scope and arguments of the book as limitations, albeit ones that I hope to be able to remedy before too long.However, limited though the book clearly is, I believe that it lays out the essential components of a democratic conception of privacy and that, by analysing and synthesizing several diverse bodies of literature, it may help those who are interested in the relations between privacy, equality and democracy. (shrink)

It has become increasingly difficult for individuals to exercise meaningful control over the personal data they disclose to companies or to understand and track the ways in which that data is exchanged and used. These developments have led to an emerging consensus that existing privacy and data protection laws offer individuals insufficient protections against harms stemming from current data practices. However, an effective and ethically justified way forward remains elusive. To inform policy in this area, we propose the Ethical (...) Data Practices framework. The framework outlines six principles relevant to the collection and use of personal data—minimizing harm, fairly distributing benefits and burdens, respecting autonomy, transparency, accountability, and inclusion—and translates these principles into action-guiding practical imperatives for companies that process personal data. In addition to informing policy, the practical imperatives can be voluntarily adopted by companies to promote ethical data practices. (shrink)

Accountability protects public health and safety, facilitates law enforcement, and enhances national security, but it is much more than a bureaucratic concern for corporations, public administrators, and the criminal justice system. In Why Privacy Isn't Everything, Anita L. Allen provides a highly original treatment of neglected issues affecting the intimacies of everyday life, and freshly examines how a preeminent liberal society accommodates the competing demands of vital privacy and vital accountability for personal matters. Thus, "None of your (...) business!" is at times the wrong thing to say, as much of what appears to be self-regarding conduct has implications for others that should have some bearing on how a person chooses to act. (shrink)

Can the government stick us with privacy we don't want? It can, it does, and according to this author, may need to do more of it. Privacy is a foundational good, she argues, a necessary tool in the liberty-lover's kit for a successful life. A nation committed to personal freedom must be prepared to mandate inalienable, liberty-promoting privacies for its people, whether they eagerly embrace them or not. The eight chapters of this book are reflections on public regulation (...) of privacy at home; isolation and confinement for punitive and health reasons; religious modesty attire; erotic nudity; workplace and professional confidentiality; racial privacy; online transactions; social networking; and the collection, use and storage of electronic data. (shrink)

People freely disclose vast quantities of personal and personally identifiable information. The central question of this Meador Lecture in Morality is whether they have a moral (or ethical) obligation (or duty) to withhold information about themselves or otherwise to protect information about themselves from disclosure. Moreover, could protecting one’s own information privacy be called for by important moral virtues, as well as obligations or duties? Safeguarding others’ privacy is widely understood to be a responsibility of government, business, and (...) individuals. The “virtue” of fairness and the “duty” or “obligation” of respect for persons arguably ground other-regarding responsibilities of confidentiality and data security. But is anyone ethically required—not just prudentially advised—to protect his or her own privacy? If so, how might a requirement to protect one’s own privacy and to display ethical virtues of reserve, modesty and temperance properly influence everyday choices, public policy, or the law? I test the idea of an ethical mandate to protect one’s own privacy, while identifying the practical and philosophical problems that bear adversely on the case. I consider “conceptual” and “libertarian” objections to the view that each individual indeed has a moral obligation to safeguard his or her own privacy. Government and industry are not off the hook if privacy is a duty of self-care and self-respect: they have responsibilities and are freshly viewed as partners in moral agents’ quest for ethical goodness. (shrink)

Heath services come with the promise of confidentiality.1 The ethical mandate to safeguard the confidentiality of personal health information aligns with legal mandates to do the same. Numerous state and federal laws demand one form of health data confidentiality or another, best illustrated by the Health Insurance Portability and Accountability Act.2 In early 2011, the Department of Health and Human Services decided to take a tougher stand against HIPAA violators, utilizing powers created by the Health Information Technology for Economic and (...) Clinical Health Act.3 Ushering in a new era, the U.S. Department of Health and Human Services imposed an unprecedented civil penalty of $4.3 million on Cignet Health of .. (shrink)

As a U.S. civil rights policy, affirmative action commonly denotes race-conscious and result-oriented efforts by private and public officials to correct the unequal distribution of economic opportunity and education attributed to slavery, segregation, poverty and racism. Opponents argue that affirmative action (1) violates ideals of color-blind public policies, offending moral principles of fairness and constitutional principles of equality and due process; (2) has proven to be socially and politically divisive; (3) has not made things better; (4) mainly benefits middle-class, wealthy (...) and foreign-born blacks; (4) stigmatizes its beneficiaries; and (5) compromises the self-esteem and self-respect of beneficiaries who know that they have been awarded preferential treatment. By way of a thought experiment, imagine that after decades of public policy and experimentation, the United States public finally came to agree: affirmative action is morally and legally wrong. Employing such a thought experiment, this essay by a beneficiary of affirmative action—written in response to James Sterba’s Affirmative Action for the Future (2009)—examines duties of moral repair and the possibility that the past beneficiaries of affirmative action owe apologies, compensation or some other highly personal form of corrective accountability. Beneficiaries of affirmative action have experienced woundedness and moral insecurity. Indeed, the practice of affirmative action comes with a psychology, a set of psychological benefits and burdens whose moral logic those of us who believe in our own fallibility—as much as we believe in the justice of what we have received and conferred on others—should address. (shrink)

This article explores some implications of the increasing reliance on clinical trials in contemporary health care, particularly health care payers’ efforts to use them in the so-called fourth hurdle decisions. How do these agencies manage medical uncertainty given the desire to produce clear guidelines for clinicians? Their solutions take account of trials in at least two ways, reflecting broader debates about the meaning of these medical experiments. Trials can be read as either ‘‘proofs of protocol’’—straightforward guides to action with individual (...) drugs in specific populations—or ‘‘proofs of principle’’— where extrapolation is made possible through an appeal to underlying biological mechanisms. These contrasting readings of trials are illustrated with reference to guidelines on heart disease prevention/cholesterol reduction using statins among the elderly in North America and the United Kingdom. Uncertainty in these cases does not lead to inertia but solutions use different fixed points to aid navigation, including both physiological principles and moral values. (shrink)

Are rights to privacy consistent with sexual equality? In a brief, but influential, article Catherine MacKinnon trenchantly laid out feminist criticisms of the right to privacy. In “Privacy v. Equality: Beyond Roe v. Wade” she linked familiar objections to the right to privacy and connected them to the fate of abortion rights in the U.S.A. (MacKinnon, 1983, 93-102). For many feminists, the Supreme Court’s decision in Roe v. Wade (1973) had suggested that, notwithstanding a dubious (...) past, legal rights to privacy might serve feminist objectives, and prove consistent with sexual equality. By arguing that Roe’s privacy justification of abortion rights was directly responsible for the weakness and vulnerability of abortion rights in America, MacKinnon took aim at feminist hopes for the right to privacy at their strongest point. Maintaining that Roe’s privacy justification of abortion is intimately, and not contingently, related to the Supreme Court’s subsequent decision in Harris v. McRae, (1980) MacKinnon concluded that privacy rights cannot be reconciled with the freedom and equality of women, and so can have no place in a democracy.1 In Harris, the Supreme Court held that the State need not provide Medicaid coverage for abortions that are necessary to preserve the health, but not the life, of a pregnant woman, effectively depriving poor women of almost all state aid for abortions.2 Moreover, the Court’s subsequent decision in Bowers v . Hardwick (1986) appeared to confirm the truth of MacKinnon’s observation – though this case concerned gay rights, rather than abortion rights, and occurred several years after MacKinnon’s condemnation of Harris. -/- This paper examines MacKinnon’s claims about the relationship of rights to privacy and equality in light of the reasoning in Harris and Bowers. When we contrast the Majority and Minority decisions in these cases, it shows, we can distinguish interpretations of the right to privacy that are consistent with sexual equality from those that are not. This is not simply because the two differ in their consequences – though they do - but because the former, unlike the latter, rely on empirical and normative assumptions that would justify sexual inequality whatever right they were used to interpret. So while I agree with MacKinnon that the Majority’s interpretation of the right to privacy in Harris is inconsistent with the equality of men and women, I show that there is no inherent inconsistency in valuing both privacy and equality, and no reason why we must chose to protect the one, rather than the other. Indeed, an examination of MacKinnon’s article, I suggest, can help us to see why rights to privacy can be part of a scheme of democratic rights, and how we might go about democratising the right to privacy in future. To avoid confusion I should emphasise that my arguments are of a philosophical, not a legal, nature. Thus, I will be ignoring the specifically legal and constitutional aspects of MacKinnon’s article, and of the Supreme Court decisions, in order to bring their philosophical significance into focus. -/- . (shrink)

Ethics consultation has become an integral part of the fabric of U.S. health care delivery. This article summarizes the second edition of the Core Competencies for Health Care Ethics Consultation report of the American Society for Bioethics and Humanities. The core knowledge and skills competencies identified in the first edition of Core Competencies have been adopted by various ethics consultation services and education programs, providing evidence of their endorsement as health care ethics consultation (HCEC) standards. This revised report was prompted (...) by thinking in the field that has evolved since the original report. Patients, family members, and health care providers who encounter ethical questions or concerns that ethics consultants could help address deserve access to efficient, effective, and accountable HCEC services. All individuals providing such services should be held to the standards of competence and quality described in the revised report. (shrink)

The formal theory of rational choice as grounded in desire-satisfaction cannot account for the problem of such deformed desires as women's slavish desires. Traditional “informed desire” tests impose conditions of rationality, such as full information and absence of psychoses, but do not exclude deformed desires. I offer a Kantian-inspired addendum to these tests, according to which the very features of deformed desires render them irrational to adopt for an agent who appreciates her equal worth.

The formal theory of rational choice as grounded in desire-satisfaction cannot account for the problem of such deformed desires as women's slavish desires. Traditional “informed desire” tests impose conditions of rationality, such as full information and absence of psychoses, but do not exclude deformed desires. I offer a Kantian-inspired addendum to these tests, according to which the very features of deformed desires render them irrational to adopt for an agent who appreciates her equal worth.

In lieu of an abstract, here is a brief excerpt of the content:Deaconesses and Ritual ImpurityCatherine Brown TkaczCultural diversity underlies the differences between deaconesses of the East and of the West.1 In the West, women were recognized by their faith as able to catechize others and to assist women at baptism; in some parts of the East, only a deaconess could take these roles. Again, only in some areas of the East, women at certain times were not permitted to enter (...) the church building, but deaconesses could take the Eucharist to these housebound women. In religious life, corresponding differences existed. In the West, nuns were fitted by their vows to take various roles in the Liturgy of the Hours; in the East, in some areas, only a diaconal abbess could take these roles. In remote monasteries which might lack a priest for some time, the diaconal abbess could distribute pre-consecrated communion to the community. Long has cosmic dualism been recognized as a trait of the Eastern groups that had deaconesses. Now another trait can be identified: [End Page 187] apparently the groups which retained the Levitical laws of ritual impurity were the ones that needed the gender-specific ministry of deaconesses. Examining the theological and cultural context in which that office arose helps explain this varied history. Next, the Western deaconess is most clearly limned by comparing the pertinent Latin ceremonies. This also sheds unexpected light on how the Roman Catholic Church protected the property rights of consecrated women.The Context in Which Deaconesses AroseJesus taught a new doctrine: the call to sanctification: "Be perfect as your Father in heaven is perfect" (Matt 5:48). Again, he commanded them to imitate him, to take up their cross daily and follow him (Luke 9:23). The post-Gospels New Testament continued to suggest ways for the believer to imitate Christ (for example, Heb 13:10–15). These teachings ground the doctrine that every human person is called to be holy and like Christ. To ensure that his followers knew that this vocation to holiness concerns women equally with men, Jesus demonstrated and emphasized the spiritual equality of the sexes throughout his time on earth.2 In an unprecedented way, he provided balanced examples of male and female in his interactions with men and women, in his healings, resurrection miracles, parables, and prophecies.3 In contrast, in the Old Testament and in the Jewish Haggadah, [End Page 188] paired male and female examples are "quite rare."4 While Tannaite Jews "exempted" women from reciting Shema and other acts of ritual worship and required only domestic devotions, Jesus elicited a public profession of faith from a woman as well as from a man—Peter (John 6:69) and Martha of Bethany (John 11:27)—and hers proves to be fuller.5 This dynamically demonstrated the spiritual equality of the sexes, and Eustathios of Antioch, Chrysostom, Augustine, and others praised Martha for teaching the faith.6From the start, both men and women were instructed in the faith, baptized, and received communion.7 Women also participated with men in evangelizing others. This began at Jesus's presentation in the Temple, his first public appearance, when the prophetess Anna announced the coming of the Messiah (Luke 2:36–38). The Samaritan woman evangelized her community: as soon as she learned of Jesus through conversation with him, she actively instructed others, so that many believed in him "because of the woman's testimony" (John 4:28–30, 39–42). The evangelical work of Priscilla was reported, with the account of her teaching a man (Acts 18:2, 26). That is, Christians interacted without a strict segregation of the sexes. When the apostles learned of neglect of the Greek widows, they obviously did not think that only other women could respond to this social need, for the apostles appointed men to do so (Acts 6:1–6).8Contrast this to the Jewish understanding of the roles of men and women. In the Temple, only Jewish men were allowed inside; women were relegated to the women's court. This segregation continued in medieval synagogues.9 [End Page 189] Likewise, as noted above, the Tannaite Jews "exempted" women from public worship. In Christian churches, however... (shrink)

'Anita L. Allen breaks new ground...A stunning indictment of women's status in contemporary society, her book provides vital original scholarly research and insight.' |s-NEW DIRECTIONS FOR WOMEN.

This article argues that people have legitimate interests in privacy that deserve legal protection on democratic principles. It describes the right to privacy as a bundle of rights of personal choice, association and expression and shows that, so described, people have legitimate political interests in privacy. These interests reflect the ways that privacy rights can supplement the protection for people's freedom and equality provided by rights of political choice, association and expression, and can help to make (...) sure that these are, genuinely, democratic. Feminists have often been ambivalent about legal protection for privacy, because privacy rights have, so often, protected the coercion and exploitation of women, and made it difficult to politicise personal forms of injustice. However, attention to the differences between democratic and undemocratic forms of politics can enable us to meet these concerns, and to distinguish a democratic justification of privacy rights from the alternatives. (shrink)

If Michael Walzer's relentlessly expository book can be said to have a dominant theme, it is the theme of domination. How do we achieve a society without domination? Simple equality is impossible; people differ in skill, strength, wisdom, courage, and energy. The root meaning of the egalitarian demand, according to Walzer, is negative. It aims at aristocratic privilege, capitalist wealth, bureaucratic power, and racial and sexual supremacy; in short, at the ability of people to dominate others. It's not the (...) fact that there are rich and poor that generates the egalitarian impulse, he continues, but the fact that the rich grind the faces of the poor, impose their poverty on them, command their deferential behavior. The popular demand for the abolition of social and political differences results, he says, from what aristocrats do to commoners, what office holders do to ordinary citizens, what people with power do to those without it. Behind the vision of equality is the experience of subordination. "No more bowing and scraping, fawning and toadying; no more fearful trembling, no more high and mightiness; no more masters, no more slaves." The modern society in which these putative activities take place is not identified. Surely he cannot mean his own society? (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Biting the Bullet:The Ethics and Aesthetics of ViolenceJonathan AllenThe Bullet's Song: Romantic Violence and Utopia, by William Pfaff. New York. Simon & Schuster, 2004, 368 pp.Regarding the Pain of Others, by Susan Sontag. New York, Picador, 2003, 131 pp.In the nineteenth century a broadly influential branch of Romantic philosophy insisted that goodness and beauty were intimately related. The goals of ethical and aesthetic education were taken to be one (...) and the same—the cultivation of the kalokagathos or "noble-and-beautiful" individual.1 This robust view of the relation between ethical and aesthetic education is now rarely defended; it was dealt a mortal wound by the inconvenient fact that highly cultured or Gebildete individuals have been implicated in the twentieth century's worst political crimes.This does not mean, however, that connections between ethical and aesthetic projects are no longer made. One such attempt to relate ethics and aesthetic—a bleak, somber, and deeply chastened attempt—is presented in the late Susan Sontag's Regarding the Pain of Others. In this small but dense book, Sontag assesses the hope that the reproduction of images, especially photographic images, of violence and atrocity might help to abolish war, or at least to play a role in combating genocide or the commission of gross violations of the laws of war. While she evidently wishes to find "an antidote to the perennial seductiveness of war," Sontag is doubtful that photography is equal to this moral burden.2Sontag's work concentrates on the aesthetic and ethical challenges that confront any attempt to convey the horrors of war to uninvolved observers. Her focus is thus trained on an attempt to exorcise what she refers to as the "seductiveness of war"; she is not primarily concerned to identify the source of war's allure (though she does have some interesting observations to make on the issue).3 William Pfaff, by contrast, is both repelled and fascinated by the modern embrace of violence. The Bullet's Song: Romantic Violence and Utopia offers an enthralling account of the intellectual and aesthetic forces that provoked the feverish modern love affair with violence and war. Pfaff is at least as doubtful as Sontag, however, that that love affair [End Page 100] is over and that we are in a position to forge a more pacific sensibility. Nevertheless, he insists that if we are to have the slightest hope of avoiding a full-scale repetition of the twentieth-century's "carnival of inhumanity," we need to understand the nature of its romance with violence.So how did that romance come about? The central theme of The Bullet's Song is the consequences of the loss of "chivalry." This, according to Pfaff, was a code that "held that what an individual or society could licitly do to another was limited by a morality linked to the essential values of Western civilization."4 Within this framework, it was expected that states would sometimes go to war with one another, but war was seen merely as an extreme means of settling disputes, not of eliminating entire societies or remaking the world. For individuals, war was presented as "a test of valor, rewarded by 'honor'"—in other words, it was seen as an occasion to test oneself in the light of a set of ideals of conduct that operated as constraints on permissible behavior in war.5 All of this came to a sticky end in the trenches of World War I, replaced by a morally nihilistic idea of total war. Pfaff claims that this moral vacuum proved intolerable to many individuals. They reacted in several different ways. Some attempted to construct "codes of individual transcendence" and "collective will," while others gave themselves over to "utopias based on historical fictions."6This is a very large story, and it is in fact too bulky for the confines of this book. First, it must be said that Pfaff fails to present his central claims clearly. He is unclear, for example, as to exactly what was lost with the destruction of the chivalric code, as well as what caused its destruction. At times, he seems to be suggesting that the rise of... (shrink)

Despite the promise to save every life, the COVID-19 pandemic has exposed social and racial inequalities, precarious living conditions, and engendered an exponential increase in overdose deaths. Although some lives are considered sacred, others are deliberately sacrificed. This article draws on the theoretical work of Foucault and scholars who further developed his concept of biopolitics. While biopolitics aims to ameliorate the health of populations, Foucault never systematically accounted for the unequal value of lives. In the name of saving the (...) biological lives of people who use drugs (PWUD) during the pandemic, the harm reduction movement has emphasized the need for safe supply, decriminalization, and housing; governments have started implementing these measures, which were previously rejected as utopian and unrealistic. Paradoxically, the use of drugs itself, and therefore the increased risk of death from overdose or other medical sequelae, is the only way PWUD can achieve enough visibility to be recognized as a life worth saving. The humanitarian rationale of harm reduction concerns itself with the biological life and stipulates social and political rights in the name of its sacredness. This is what anthropologist Fassin and others called biolegitimacy—the recognition of life reduced to its physiological, biological essence. (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)

Artificial Intelligence (AI) is taking centre stage in economic growth and business operations alike. Public discourse about the practical and ethical implications of AI has mainly focussed on the societal level. There is an emerging knowledge base on AI risks to human rights around data security and privacy concerns. A separate strand of work has highlighted the stresses of working in the gig economy. This prevailing focus on human rights and gig impacts has been at the expense of a (...) closer look at how AI may be reshaping traditional workplace relations and, more specifically, workplace health and safety. To address this gap, we outline a conceptual model for developing an AI Work Health and Safety (WHS) Scorecard as a tool to assess and manage the potential risks and hazards to workers resulting from AI use in a workplace. A qualitative, practice-led research study of AI adopters was used to generate and test a novel list of potential AI risks to worker health and safety. Risks were identified after cross-referencing Australian AI Ethics Principles and Principles of Good Work Design with AI ideation, design and implementation stages captured by the AI Canvas, a framework otherwise used for assessing the commercial potential of AI to a business. The unique contribution of this research is the development of a novel matrix itemising currently known or anticipated risks to the WHS and ethical aspects at each AI adoption stage. (shrink)

We offer an account of the nature and structure of the immorality of colonialism. We distinguish between the fundamental wrong of colonialism and the other wrongs that the fundamental wrong facilitated. On our view, the fundamental wrong was that colonizers regarded the colonized as incapable of managing their own affairs, in effect relegating them to the status of minors or mentally incompetent adults. We call this the nonautonomy assumption. It could also be called the inferior status assumption, for reasons that (...) will become clear as we proceed. We argue that, in addition to the nonautonomy assumption, the most serious wrongs of colonialism were severe economic injustices and practices of humiliation, and that these wrongs can reasonably be seen to be facilitated by or grounded in the fundamental wrong. We make the case that our analysis has two virtues: it provides a more comprehensive characterization of the wrongs of colonialism and the relationships between them than extant philosophical accounts and it helps make sense of the concepts of neocolonialism and internal colonialism, which extant accounts are unable to do. This has the added advantage of bringing discussions that have hitherto taken place in fields such as political theory, postcolonial studies, history, and critical theory into the ambit of analysis by political philosophers, using tools and concepts that philosophers have at their command, such as the notions of autonomy and inferior status. After developing our own view, we offer a critical appraisal of three prominent recent attempts to identify “the wrong” of colonialism, the views of Anna Stilz, Massimo Renzo, and Lea Ypi. We argue that by focusing on defects of the political structure of colonialism such as the deprivation of collective self‐determination, these accounts do not clearly identify the fundamental wrong of colonialism and either completely ignore or pay insufficient attention to severe economic injustices and practices of humiliation; and that they also render the notions of neocolonialism and internal colonialism unintelligible. While acknowledging that the nonautonomy assumption encouraged colonialists to deprive the colonized of collective self‐determination and recognizing that this was a serious wrong, we deny that the deprivation of collective self‐determination was the fundamental wrong of colonialism, as the denial of autonomy is more basic than the denial of political self‐management. The analysis we offer makes it clear that colonialism is not a topic of merely historical interest. The most serious wrongs suffered by colonized people did not end with decolonization, that is, the achievement of independent statehood. The fundamental wrong of colonialism was grounded in inequalities of power that persist today and that continue to contribute to economic injustices and to the failure to regard the weaker as equals, in a variety of contexts, including, but not limited to the case of formerly colonized peoples. (shrink)

BackgroundInvolvement of adolescent girls in biomedical HIV research is essential to better understand efficacy and safety of new prevention interventions in this key population at high risk of HIV infection. However, there are many ethical issues to consider prior to engaging them in pivotal biomedical research. In Uganda, 16–17-year-old adolescents can access sexual and reproductive health services including for HIV or other sexually transmitted infections, contraception, and antenatal care without parental consent. In contrast, participation in HIV prevention research involving investigational (...) new drugs requires adolescents to have parental or guardian consent. Thus, privacy and confidentiality concerns may deter adolescent participation. We describe community perspectives on ethical considerations for involving adolescent girls in the MTN 034 study in Uganda.MethodsFrom August 2017 to March 2018, we held five stakeholder engagement meetings in preparation for the MTN 034 study in Kampala, Uganda (NCT03593655): two with 140 community representatives, two with 125 adolescents, and one with 50 adolescents and parents. Discussions were moderated by the study team. Proceedings were documented by notetakers. Summary notes described community perspectives of adolescent participation in HIV research including convergent, divergent or minority views, challenges, and proposed solutions.ResultsMost community members perceived parental or guardian consent as a principal barrier to study participation due to concerns about adolescent disclosure of pre-marital sex, which is a cultural taboo. Of 125 adolescent participants, 119 (95%) feared inadvertent disclosure of sexual activity to their parents. Community stakeholders identified the following critical considerations for ethical involvement of adolescents in HIV biomedical research: (1) involving key stakeholders in recruitment, (2) ensuring confidentiality of sensitive information about adolescent sexual activity, (3) informing adolescents about information to be disclosed to parents or guardians, (4) offering youth friendly services by appropriately trained staff, and (5) partnering with community youth organizations to maximize recruitment and retention.ConclusionsStakeholder engagement with diverse community representatives prior to conducting adolescent HIV prevention research is critical to collectively shaping the research agenda, successfully recruiting and retaining adolescents in HIV clinical trials and identifying practical strategies to ensure high ethical standards during trial implementation. (shrink)

BackgroundThe boundaries between health-related research and practice have become blurred as initiatives traditionally considered to be practice increasingly use the same methodology as research. Further, the application of different ethical requirements based on this distinction raises concerns because many initiatives commonly labelled as “non-research” are associated with risks to patients, participants, and other stakeholders, yet may not be subject to any ethical oversight. Accordingly, we sought to develop a tool to facilitate the systematic identification of risks to human participants and (...) determination of risk level across a broad range of projects and health-related contexts. This paper describes the development of the Public Health Ontario Risk Screening Tool.MethodDevelopment of the PHO Risk Screening Tool included: preparation of a draft risk tool ; expert appraisal; internal stakeholder validation; external validation; pilot testing and evalution of the draft tool; and revision after 1 year of testing.ResultsA risk screening tool was generated consisting of 20 items organized into five risk domains: Sensitivity; Participant Selection, Recruitment and Consent; Data/Sample Collection; Identifiability and Privacy Risk; and Commercial Interests. The PHO Risk Screening Tool is an electronic tool, designed to identify potential project-associated risks to participants and communities and to determine what level of ethics review is required, if any. The tool features an easy to use checklist format that generates a risk score associated with a suggested level of ethics review once all items have been completed. The final score is based on a threshold approach to ensure that the final score represents the highest level of risk identified in any of the domains of the tool.ConclusionsThe PHO Risk Screening Tool offers a practical solution to the problem of how to maintain accountability and appropriate risk oversight that transcends the boundaries of research and practice. We hope that the PHO Risk Screening Tool will prove useful in minimizing the problems of over and under protection across a wide range of disciplines and jurisdictions. (shrink)

Background Considering the disruptive potential of AI technology, its current and future impact in healthcare, as well as healthcare professionals’ lack of training in how to use it, the paper summarizes how to approach the challenges of AI from an ethical and legal perspective. It concludes with suggestions for improvements to help healthcare professionals better navigate the AI wave. Methods We analyzed the literature that specifically discusses ethics and law related to the development and implementation of AI in healthcare as (...) well as relevant normative documents that pertain to both ethical and legal issues. After such analysis, we created categories regrouping the most frequently cited and discussed ethical and legal issues. We then proposed a breakdown within such categories that emphasizes the different - yet often interconnecting - ways in which ethics and law are approached for each category of issues. Finally, we identified several key ideas for healthcare professionals and organizations to better integrate ethics and law into their practices. Results We identified six categories of issues related to AI development and implementation in healthcare: (1) privacy; (2) individual autonomy; (3) bias; (4) responsibility and liability; (5) evaluation and oversight; and (6) work, professions and the job market. While each one raises different questions depending on perspective, we propose three main legal and ethical priorities: education and training of healthcare professionals, offering support and guidance throughout the use of AI systems, and integrating the necessary ethical and legal reflection at the heart of the AI tools themselves. Conclusions By highlighting the main ethical and legal issues involved in the development and implementation of AI technologies in healthcare, we illustrate their profound effects on professionals as well as their relationship with patients and other organizations in the healthcare sector. We must be able to identify AI technologies in medical practices and distinguish them by their nature so we can better react and respond to them. Healthcare professionals need to work closely with ethicists and lawyers involved in the healthcare system, or the development of reliable and trusted AI will be jeopardized. (shrink)

The privacy of the dead is an interesting area of concern for bioethicists. There is a legal doctrine that the dead can't have privacy rights, but also a body of contrary law ascribing privacy rights to the deceased and kin in relation to the deceased. As women's abortion privacy is under assault by American courts and legislatures, the implications of ascribing privacy rights to embryos and fetuses is more important than ever. Caution is called for (...) in this domain. (shrink)

The artist and analytic Kant scholar Adrian Piper has been aptly described as “one of the most important and influential cultural figures of our time. The award-winning work of installation and participatory performance art, Probable Trust Registry: Rules of the Game #1-3, implicitly poses philosophical questions of interest to contractarian philosophy and its critique, including whether through an art installation one can execute a genuine, morally binding commitment to be honest, authentic, and respectful of oneself. Especially for audiences who closely (...) identify with her experiences, Piper’s artwork, like that of other important artists, has powerfully catalytic ethical potential. Motivated by admiration for the artist and a perceived conflictual relationship between women of color and conventional discourses of moral solidarity, I offer three different ways to understand Piper’s Probable Trust Registry. I suggest that Piper’s thought-provoking artwork, which implicitly nods at John Rawls and Charles Mills, can be interpreted as asking its audiences to agree to selections from a menu of rules that, in the alternative, embrace universal moral imperatives, predict future moral integrity, or vow moral integrity. (shrink)

If feminism has taken a stance toward privacy, the stance is ambivalence. Conceptions of privacy have been central to many critiques of what feminists term the “liberal” and “patriarchical” dimensions of Western societies. Just how privacy has been central to feminism is a worthwhile subject of inquiry. Interestingly, conceptions of privacy have functioned within feminist thought both as targets and as tools of critique. Some feminists target privacy for condemnation as a barrier to female liberation, (...) while others embrace it as a tool of female liberation. (shrink)

Ranging from miniaturized biological robots to organoids, multi-cellular engineered living systems (M-CELS) pose complex ethical and societal challenges. Some of these challenges, such as how to best distribute risks and benefits, are likely to arise in the development of any new technology. Other challenges arise specifically because of the particular characteristics of M-CELS. For example, as an engineered living system becomes increasingly complex, it may provoke societal debate about its moral considerability, perhaps necessitating protection from harm or recognition of positive (...) moral and legal rights, particularly if derived from cells of human origin. The use of emergence-based principles in M-CELS development may also create unique challenges, making the technology difficult to fully control or predict in the laboratory as well as in applied medical or environmental settings. In response to these challenges, we argue that the M-CELS community has an obligation to systematically address the ethical and societal aspects of research and to seek input from and accountability to a broad range of stakeholders and publics. As a newly developing field, M-CELS has a significant opportunity to integrate ethically responsible norms and standards into its research and development practices from the start. With the aim of seizing this opportunity, we identify two general kinds of salient ethical issues arising from M-CELS research, and then present a set of commitments to and strategies for addressing these issues. If adopted, these commitments and strategies would help define M-CELS as not only an innovative field, but also as a model for responsible research and engineering. (shrink)

In 1934, Karl N. Llewellyn published a lively essay trumpeting the dawn of legal realism, "On Philosophy in American Law." The charm of his defective little piece is its style and audacity. A philosopher might be seduced into reading Llewellyn’s essay by its title; but one soon learns that by "philosophy" Llewellyn only meant "atmosphere". His concerns were the "general approaches" taken by practitioners, who may not even be aware of having general approaches. Llewellyn paired an anemic concept of philosophy (...) with a pumped-up conception of law. Llewellyn’s "law" included anything that reflects the "ways of the law guild at large" - judges, legislators, regulators, and enforcers. Llewellyn argued that the legal philosophies implicit in American legal practice had been natural law, positivism and realism, each adopted in response to felt needs of a time. We must reckon with many other implicit "philosophies" to understand the workings of the law guild, not the least of which has been racism. Others, maternalism and paternalism, my foci here, persist in American law, despite women’s progress toward equality. Both maternalism and paternalism were strikingly present in a recent decision of the U.S. Supreme Court, Gonzales v. Carhart, upholding the federal Partial-Birth Abortion Ban Act. (shrink)

This chapter contains sections titled: Focus: The United States Theorizing about Privacy Meaning and Definition Questions of Value Conclusion References.

In 1905 the Supreme Court of Georgia became the first state high court to recognize a freestanding “right to privacy” tort in the common law. The landmark case was Pavesich v. New England Life Insurance Co. Must it be a cause for deep jurisprudential concern that the common law right to privacy in wide currency today originated in Pavesich’s explicit judicial interpretation of the requirements of natural law? Must it be an additional worry that the court which originated (...) the common law privacy right asserted that a free white man whose photograph is published without his consent in a city newspaper is like a slave in bondage? I argue that the jurisprudence of Pavesich need not be troubling. Pavesich’s natural law argument was supplemented by several positive law arguments. The positive law arguments were a strong enough basis for finding a right to privacy in the common law, as indeed Samuel Warren and Louis Brandeis had previously argued. The observation that the Pavesich court’s natural law argument ran alongside positivistic arguments suggests that the arresting, high-toned natural law and slavery appeals in Pavesich are inessential rhetorical throwaways. But I maintain that the natural law argument and slavery analogy features of Judge Andrew Jackson Cobb’s opinion extolling the “liberty of privacy” are (1) of critical importance to a full contextual understanding of the decision and (2) illuminate the contemporary case for recognizing invasions of privacy as civil injuries to freedom and self-determination. One can poke holes in the logic of Thomas Aquinas and John Locke as scholars have done for centuries. But one can as easily choose to celebrate the spirit of the natural law tradition. The natural law tradition represents efforts rhetorically, rationally, and intuitively to derive principles of justice and goodness from basic facts about human characteristics, needs, and desires, where otherwise binding sovereign law may fall short. (shrink)

Privacy and technology clash in the courts. I elaborate the example of Puttaswamy v Union of India (2017), an example from the High Court of India, whose sweeping and inclusive jurisprudential style raises starkly the question of the influence that academic philosophers and other scholars have over how legitimate societal interests in exploiting information technology and protecting personal privacy are “balanced” by the courts. Philosophers will be satisfied to see that their theories are acknowledged in a landmark national (...) decision finding that India’s 1.3 billion people have a constitutional, fundamental right to privacy that constrains a challenged government biometric identification system. Some scholars will appreciate the inclusive definition of privacy, which included decisional privacy, combined with the treatment of privacy as a paramount human good meriting the protection of fundamental rights. But some academic philosophers are potentially disappointed that the Court synthesizes rather than differentiates among their competing theories, concepts, and definitions, and, in the end, relies upon liberal Enlightenment ideals that some scholars have argued are singularly ill-suited for the twenty-first century. (shrink)

On the one hand, there seem to be compelling parallels to moral responsibility, blameworthiness, and praiseworthiness in domains other than the moral. For example, we often praise people for their aesthetic and epistemic achievements and blame them for their failures. On the other hand, it has been argued that there is something special about the moral domain, so that at least one robust kind of responsibility can only be found there. In this paper, I argue that we can adopt a (...) unifying framework for locating responsible agency across domains, thereby capturing and explaining more of our actual practices. The key, I argue, is to identify the right conditions for being morally accountable, which I take to be a matter of having an opportunity of a good enough quality to act well. With this account in hand, I argue that we can adopt a unifying framework that allows us to recognize parallels across domains, even as it points the way to important differences among them. (shrink)

This important book was the first serious work of philosophy to address the question: Do adults have a moral right to use drugs for recreational purposes? Many critics of the 'war on drugs' denounce law enforcement as counterproductive and ineffective. Douglas Husak argues that the 'war on drugs' violates the moral rights of adults who want to use drugs for pleasure, and that criminal laws against such use are incompatible with moral rights. This is not a polemical tract but a (...) scrupulously argued work of philosophy that takes full account of all available data concerning drug use in the United States today. The author is careful to describe the properties a recreational drug would have to possess before the state would be justified in prohibiting it. Since criminal laws against the use of recreational drugs are justified neither by the harm users cause to themselves nor by the harm users cause to each other, Professor Husak concludes that such laws are, in almost all cases, unjustified. (shrink)

Introduction : kith, kin, and family / Sally Haslanger and Charlotte Witt Adoption and its progeny : rethinking family law, gender, and sexual difference / Drucilla Cornell Open adoption is not for everyone / Anita L. Allen Methods of adoption : eliminating genetic privilege / Jacqueline Stevens Several steps behind : gay and lesbian adoption / Sarah Tobias A child of one’s own : property, progeny, and adoption / Janet Farrell Smith Family resemblances : adoption, personal identity, and genetic (...) essentialism / Charlotte Witt Being adopted and being a philosopher : exploring identity and the "desire to know" differently / Kimberly Leighton Real othering : the metaphysics of maternity in children’s literature / Shelley Park Accidents and contingencies of love / Songsuk Hahn ; comments by Harry Frankfurt Abuse and neglect, foster drift, and the adoption alternative / Elizabeth Bartholet Feminism, race, and adoption policy / Dorothy Roberts Racial randomization / Hawley Fogg-Davis You Mixed?: racial identity without racial biology / Sally Haslanger. (shrink)

Is there any reason not to spy on other people as necessary to get the facts straight, especially if you can put the facts you uncover to good use? To “spy” is secretly to monitor or investigate another's beliefs, intentions, actions, omissions, or capacities, especially as revealed in otherwise concealed or confidential conduct, communications and documents. By definition, spying involves secret, covert activity, though not necessarily lies, fraud or dishonesty. Nor does spying necessarily involve the use of special equipment, such (...) as a tape recorder or high-powered binoculars. Use of a third party agent, such as a “private eye” or Central Intelligence Agency operative is not necessary for surveillance to count as spying. Spying is morally troublesome both because it violates privacy norms and because it relies on secrecy and, perhaps, nefarious deception. Contemporary technologies of data collection make secret, privacy-invading surveillance easy and nearly irresistible. For every technology of confidential personal communication - telephone, mobile phone, computer email - there are one or more counter-technologies of eavesdropping. But covert surveillance conducted by amateur and professional spies still includes old-fashioned techniques of stealth, trickery and deception known a half century ago: shadowing by car, peeking at letters and diaries, donning disguises, breaking and entering, taking photographs, and tape recording conversations. The ethical examination of spying cannot be reduced to a conversation about reigning in the mischief potential of twenty-first century technology. We do need to concern ourselves with what tomorrow's spies will do with nanotechnology, but plenty of spying is possible with the time-tested techniques of the Baby Boomers, or even, for that matter, the Victorians. The philosophical problem I wish to consider here is the ethical limits of spying on others, when the reasons for spying are good. I explore the plausibility of three interrelated ideas. The first idea is one I will call the anti-spying principle: spying on other adults is prima facie unethical. The second idea is an exception to the anti-spying principle: spying on others is ethically permissible, even mandatory, in certain situations, where the ends are good. The third and final idea is a constraint on exceptions to the anti-spying principle: where spying is ethically permitted or required, there are ethical limits on the methods of spying. The virtuous spy will violate privacy and transparency norms, of course; but he or she will, to the extent possible, continue to act with respect for the moral autonomy and for the moral and legal interests of the investigative target. (shrink)

Background Respect is essential to providing high quality healthcare, particularly for groups that are historically marginalized and stigmatized. While ethical principles taught to health professionals focus on patient autonomy as the object of respect for persons, limited studies explore patients’ views of respect. The purpose of this study was to explore the perspectives of a multiculturally diverse group of low-income women living with HIV (WLH) regarding their experience of respect from their medical physicians. Methods We analyzed 57 semi-structured interviews conducted (...) at HIV case management sites in South Florida as part of a larger qualitative study that explored practices facilitating retention and adherence in care. Women were eligible to participate if they identified as African American (n = 28), Hispanic/Latina (n = 22), or Haitian (n = 7). They were asked to describe instances when they were treated with respect by their medical physicians. Interviews were conducted by a fluent research interviewer in either English, Spanish, or Haitian Creole, depending on participant’s language preference. Transcripts were translated, back-translated and reviewed in entirety for any statements or comments about “respect.” After independent coding by 3 investigators, we used a consensual thematic analysis approach to determine themes. Results Results from this study grouped into two overarching classifications: respect manifested in physicians’ orientation towards the patient (i.e., interpersonal behaviors in interactions) and respect in medical professionalism (i.e., clinic procedures and practices). Four main themes emerged regarding respect in provider’s orientation towards the patient: being treated as a person, treated as an equal, treated without blame or prejudice, and treated with concern/emotional support. Two main themes emerged regarding respect as evidenced in medical professionalism: physician availability and considerations of privacy. Conclusions Findings suggest a more robust conception of what ‘respect for persons’ entails in medical ethics for a diverse group of low-income women living with HIV. Findings have implications for broadening areas of focus of future bioethics education, training, and research to include components of interpersonal relationship development, communication, and clinic procedures. We suggest these areas of training may increase respectful medical care experiences and potentially serve to influence persistent and known social and structural determinants of health through provider interactions and health care delivery. (shrink)

Scientists and clinicians are starting to translate genomic discoveries from research labs to the clinical setting. In the process, big data genomic technologies are both a risk to individual privacy and a benefit to personalized medicine. There is an opportunity to address the social and ethical demands of various stakeholders and shape the adoption of diagnostic genome technologies. We discuss ethical and practical issues associated with the networking of genomics by comparing how the European Union and North America understand (...) and practice notions of privacy and consent in research. An overview of international policy suggests the embedding of genomics within digital networks and the Internet creates conditions that challenge the management of privacy and consent in the age of big data. The risks of re-identification, informational harms, and data security vulnerabilities are issues that need to be better addressed in the clinical setting to reconcile the unpredictable pathway of research and practice in the networked information society. (shrink)

On March 15, 2006, French President Jacques Chirac signed into law an amendment to his country's education statute, banning the wearing of conspicuous signs of religious affiliation in public schools. Prohibited items included a large cross, a veil, or skullcap. The ban was expressly introduced by lawmakers as an application of the principle of government neutrality, du principe de laïcité. Opponents of the law viewed it primarily as an intolerant assault against the hijab, a head and neck wrap worn by (...) many Muslim women around the world. In Politics of the Veil, Professor Joan Wallach Scott offers an illuminating account of the significance of the hijab in France. Scott's lucid, compact examination of the hijab complements previous feminist scholarship on veiling with a close look at its role in a particular time and place - contemporary France - where it has been the subject matter of a unique political discourse. How different is America's political discourse surrounding religious symbols in the schools as compared to the French? I offer a U.S. constitutional perspective on the rights of religious minorities and women in the public schools, and suggest that a ban on the hijab must be considered unconstitutional. A proposal for a national rule against the hijab in public schools or universities would fall flat in the United States. When compared to U.S. approaches to the hijab, the French experience examined by Joan Wallach Scott underscores an important point: there is more than one way to be a modern, multicultural western liberal democracy with a Muslim population, and some ways are better than others. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.3 (2002) 299-303 [Access article in PDF] Bioethics Inside the Beltway What Should IRBs Consider When Applying the Privacy Rule to Research? Julie Waltz Gerlach In 1996, Congress mandated the establishment of standards for the privacy of individually identifiable health information through the Health Insurance and Portability and Accountability Act of 1996 (HIPAA). Until the establishment of HIPAA, personal health information could (...) be distributed without notice or consent for reasons that had nothing to do with a patient's medical treatment or health care reimbursement. Patient information held by a health plan could be passed on to a lender who then might deny the patient's application for a home mortgage or a credit card or to an employer who might use it for personnel decisions. Congress failed to meet its 21 August 1996 deadline established by HIPAA to pass privacy legislation; the Act passed the responsibility to Department of Health and Human Services (DHHS). On 28 December 2000, the Secretary of Health and Human Services released final privacy regulations relating to the protection of patients' individually identifiable health information. The "Standards for Privacy of Individually Identifiable Health Information" (Privacy Rule/current) took effect 14 April 2001. As required by HIPAA, the Privacy Rule established conditions for the collection, use, and disclosure of protected health information by covered entities for research purposes. Covered entities, defined as health plans, health care clearinghouses, and health care providers that engage electronically in a wide range of financial and administrative transactions related to payment and reimbursement, must comply by 14 April 2003 (DHHS 2000, p. 82462). To ensure that the provisions of the final rule provide strong privacy protection without hindering access to health care, the Department of Health and Human Services (DHHS 2002, p. 14776) has proposed modifications to the Privacy Rule.The final Privacy Rule (DHHS 2001) grants substantial rights to individuals/research participants to be informed of how their protected health information is maintained and how that information may be used or disclosed. It also defines individual's/research participants' rights with regard to gaining access to information about themselves, when such information is held by covered entities. [End Page 299]The Privacy Rule requires researchers either to receive authorization from individuals/research participants to collect, use, and disclose protected health information, or to obtain a waiver of authorization that is approved by an institutional review board (IRB) or Privacy Board, or to use de-identified data. Section 164.508 of the Privacy Rule, entitled "Use and Disclosures for Which an Authorization Is Required," describes how IRBs will be directly affected. The rule focuses not just on research but on the overall privacy of all identifiable health information. Institutions have the option of adding these required duties to IRBs or establishing "privacy boards." Privacy boards, as defined by the Privacy Rule, are to be composed of members with varying backgrounds and professional competency to review the effect of the research protocol on the individual/research participant's privacy rights. The board must include at least one member who is not affiliated with the covered entity, or any entity conducting or sponsoring the research, and not related to any person who is affiliated with such entities. Board members cannot participate in the review of any research project in which the member has a conflict of interest.The basic concepts and tenets of privacy and confidentiality are well known to IRBs in the United States, which operate under the Common Rule (45 CFR 46) and/or the Food and Drug Administration's (FDA) human subject protection regulations. Both sets of regulations require IRBs to ensure that risks (including privacy risks) are minimized. Under these regulations, IRBs must consider the confidentiality of research data and whether researchers should have access to confidential medical information. IRBs also must review the consent form as a process of communication that will inform research subjects about the research study.One noteworthy aspect of the Privacy Rule is its application to all research regardless of funding source. Currently, research funded by... (shrink)

Does the export orientation of a firm affect the likelihood that it adopts an environmental management certification? We use meta-regression methods to analyze systematically the corpus of published research on export-led adoption of the largest and most prominent certification, ISO 14001. We show that the explanatory variables authors choose to include in their models reflect the tenets of stakeholder and institutional theories. We also find that the literature suffers from substantial publication bias but that, once this is accounted for appropriately, (...) a genuine effect remains. The evidence from 20 years of published studies taken as a whole is that export does incentivize the adoption of the standard as often hypothesized by proponents of voluntary approaches and self-regulation. (shrink)

This important book was the first serious work of philosophy to address the question: Do adults have a moral right to use drugs for recreational purposes? Many critics of the 'war on drugs' denounce law enforcement as counterproductive and ineffective. Douglas Husak argues that the 'war on drugs' violates the moral rights of adults who want to use drugs for pleasure, and that criminal laws against such use are incompatible with moral rights. This is not a polemical tract but a (...) scrupulously argued work of philosophy that takes full account of all available data concerning drug use in the United States today. The author is careful to describe the properties a recreational drug would have to possess before the state would be justified in prohibiting it. Since criminal laws against the use of recreational drugs are justified neither by the harm users cause to themselves nor by the harm users cause to each other, Professor Husak concludes that such laws are, in almost all cases, unjustified. (shrink)

Democracy establishes relationships of political equality, ones in which citizens equally share authority over what they do together and respect one another as equals. But in today's divided public square, democracy is challenged by political thinkers who disagree about how democratic institutions should be organized, and by antidemocratic politicians who exploit uncertainties about what democracy requires and why it matters. Democratic Equality mounts a bold and persuasive defense of democracy as a way of making collective decisions, showing how equality of (...) authority is essential to relating equally as citizens. James Lindley Wilson explains why the US Senate and Electoral College are urgently in need of reform, why proportional representation is not a universal requirement of democracy, how to identify racial vote dilution and gerrymandering in electoral districting, how to respond to threats to democracy posed by wealth inequality, and how judicial review could be more compatible with the democratic ideal. What emerges is an emphatic call to action to reinvigorate our ailing democracies, and a road map for widespread institutional reform. Democratic Equality highlights the importance of diverse forms of authority in democratic deliberation and electoral and representative processes—and demonstrates how that authority rests equally with each citizen in a democracy. (shrink)

Clinical ethics consultation is largely outside the scope of regulation and oversight, despite its importance. For decades, the bioethics community has been unable to reach a consensus on whether there should be accountability in this work, as there is for other clinical activities that influence the care of patients. The American Society for Bioethics and Humanities, the primary society of bioethicists and scholars in the medical humanities and the organizational home for individuals who perform CEC in the United States, has (...) initiated a two‐step quality attestation process as a means to assess clinical ethics consultants and help identify individuals who are qualified to perform this role. This article describes the process. (shrink)

In response to recent calls to extend the underlying theories used in the literature :375–413, 2005; Craft in J Bus Ethics 117:221–259, 2013), we review the usefulness of social norm theory in empirical business ethics research. We begin by identifying the seeds of social norm theory in Adam Smith’s The Theory of Moral Sentiments, the Glasgow Edition, Oxford University Press, Oxford, 1759/1790) seminal work, The Theory of Moral Sentiments. Next, we introduce recent theory in social norm activation by Bicchieri and (...) compare the new theory to two theoretical frameworks found in the literature: Kohlberg’s Handbook of socialization theory and research, Rand McNally, Chicago, IL, 1969; in: Lickona Moral development and behavior, Holt, Rinehart & Winston, New York, 1976) theory of moral development and Cialdini and Trost’s The handbook of social psychology, Oxford University Press, Boston, 1998) taxonomy of social norms. We argue that the new theory provides useful insights by emphasizing the ability of situational cues and information to generate common expectations for social/moral norms. The theory is particularly useful for empirical research in business ethics because it gives both organizational and individual factors a role in motivating norm-based behavior. To demonstrate this usefulness, we present examples where the theory has been effectively applied in experimental accounting research to generate new insights. We conclude by citing specific examples where the theory may prove useful in empirical business ethics research. (shrink)

This paper offers both a criticism of and a novel alternative perspective on current ontologies that take race to be something that is either static and wholly evident at one’s birth or preformed prior to it. In it I survey and critically assess six of the most popular conceptions of race, concluding with an outline of my own suggestion for an alternative account. I suggest that race can be best understood in terms of one’s experience of his or her body, (...) one’s interactions with other individuals, and one’s experiences within particular cultures and societies. This embeddedness of human experience has been left out of most discussions of race which tie race to a set of characteristics (either biologically or sociologically defined). To rectify this omission, I articulate what I call the “physiosocial” view of race. This emphasizes the situatedness of human experience, the reciprocal and dynamic nature of the racial identities of individuals and groups. Approaching racial identity in this way entails a union of two historically uncomfortable partners: biological and sociological conceptions of race. If successful, this philosophical stance may illuminate the process of racial self-ascription as well as provide an explanation for the potential changeability of an individual’s racial identity at different times and at different places. (shrink)

Prescription opioid abuse (POA) is an escalating clinical and public health problem. Physician worries about iatrogenic addiction and whether patients are ‘drug seeking’, ‘abusing’ and ‘diverting’ prescription opioids exist against a backdrop of professional and legal consequences of prescribing that have created a climate of distrust in chronic pain management. One attempt to circumvent these worries is the use of opioid contracts that outline conditions patients must agree to in order to receive opioids. Opioid contracts have received some scholarly attention, (...) with trust and trustworthiness identified as key values and virtues. However, few articles have provided a critical account of trust and trustworthiness in this context, particularly when there exists disagreement about their role in terms of enhancing or detracting from the patient–physician relationship. This paper argues that opioid contracts represent a misleading appeal to patient–physician trust. Assuming the patient is untrustworthy may wrongfully undermine the credibility of the patient's testimony, which may exacerbate certain vulnerabilities of the person in pain. However, misplaced trust in certain patients may render the physician vulnerable to the potential harms of POA. If patients distrust their physician, or feel distrusted by them, this may destabilise the therapeutic relationship and compromise care. A process of epistemic humility may help cultivate mutual patient–physician trust. Epistemic humility is a collaborative effort between physicians and patients that recognises the role of patients’ subjective knowledge in enhancing physicians’ self-understanding of their theoretical and practice frameworks, values and assumptions about the motivations of certain patients who report chronic pain. (shrink)

Depression is a widespread concern in the United States. Neuromodulation treatments are becoming more common but there is emerging concern for racial disparities in neuromodulation treatment utilization. This study focuses on Transcranial Magnetic Stimulation (TMS), a treatment for depression, and the structural and attitudinal barriers that racialized individuals face in accessing it. In January 2023 participants from the Twin Cities, Minnesota engaged in focus groups, coupled with an educational video intervention. Individuals self identified as non-white who had no previous (...) TMS exposure but had tried at least one treatment for their depression. Results revealed that the intervention did not notably change knowledge or stigma about TMS, but attitudes surrounding traveling for treatment changed. Notably, barriers like affordability, frequency of treatment, and lack of knowledge persist. Participants expressed a desire for more information, personal connection, and a tailored educational approach. The study suggests a need for multifaceted strategies to reduce disparities, focusing on education, community-based resources, and policy interventions. Immediate actions that can be taken include the creation of a TMS education program focused on patient engagement and awareness about TMS. (shrink)