This article highlights major results of a study into the ethical norms and rules governing biobanks. After describing the methodology, the findings regarding four topics are presented: (1) the ownership of human biological samples held in biobanks; (2) the regulation of researchers’ use of samples obtained from biobanks; (3) what constitutes “collective consent” to genetic research, and when it is needed; and (4) benefit sharing and remuneration of research participants. The paper then summarizes key lessons to be drawn from the (...) findings and concludes by reflecting on the importance of such empirical research to inform future governance norms and practices. (shrink)

Physician aid in dying is a broader topic than euthanasia in that the latter usually refers to active euthanasia, while physician assistance also encompasses the issue of assisted suicide. Volumes could be and have been written on physician-assisted death. But my purpose here is to address a specific aspect of the topic: the policy implications with regard to proposed legislation on physician-aided death.Although the title's reference to physician assistance suggests a focus on the role of the professional, what people often (...) take to be most important and at the heart of the topic is the issue of the patient's rights, usually seen as being manifested in four different ways. First is the right to a dignified death, as free from pain and suffering as possible. In crossing national boundaries and preceding the organization of the professions and the creation of societies, this right is viewed as one that ought to be recognized. (shrink)

Games may seem like a waste of time, where we struggle under artificial rules for arbitrary goals. The author suggests that the rules and goals of games are not arbitrary at all. They are a way of specifying particular modes of agency. This is what make games a distinctive art form. Game designers designate goals and abilities for the player; they shape the agential skeleton which the player will inhabit during the game. Game designers work in the medium of agency. (...) Game-playing, then, illuminates a distinctive human capacity. We can take on ends temporarily for the sake of the experience of pursuing them. Game play shows that our agency is significantly more modular and more fluid than we might have thought. It also demonstrates our capacity to take on an inverted motivational structure. Sometimes we can take on an end for the sake of the activity of pursuing that end. (shrink)

People do not choose to suffer from catastrophic illnesses, but considerable human choice is involved in the ways in which the participants in the process treat and conduct research on these diseases. Catastrophic Diseases draws a powerful and humane portrait of the patients who suffer from these illnesses as well as of the physician-investigators who treat them, and describes the major pressures, conflicts, and decisions which confront all of them. By integrating a discussion of "facts" and "values," the authors highlight (...) the forces which affect new developments in medicine—such as kidney and heart transplants—and the controversial issues they generate. Katz and Capron explore these issues through the use of dual conceptual perspectives. Their study first examines and evaluates the authority which should be vested in each of the chief participants in the catastrophic disease process—the physician-investigator, the patient-subject and his relatives, the professionals, and the state. Challenging questions are raised concerning medical education, informed consent, and professional responsibility. The authors next explore how the roles and capacities of the participants vary not only according to the basic issues they face but also according to the point in decision-making at which these issues arise. The process of investigating and treating catastrophic diseases, the authors believe, can thus usefully be divided into three decision-making stages—the formulation of policy, the administration of research and therapy, and the review of the decisions and their consequences. In conclusion, Katz and Capron demonstrate the need for a variety of individuals and groups with diverse values to be involved in decision-making in a manner which will not unnecessarily impede the scientific investigation of these diseases. (shrink)

There seems to be a deep tension between two aspects of aesthetic appreciation. On the one hand, we care about getting things right. On the other hand, we demand autonomy. We want appreciators to arrive at their aesthetic judgments through their own cognitive efforts, rather than deferring to experts. These two demands seem to be in tension; after all, if we want to get the right judgments, we should defer to the judgments of experts. The best explanation, I suggest, is (...) that aesthetic appreciation is something like a game. When we play a game, we try to win. But often, winning isn’t the point; playing is. Aesthetic appreciation involves the same flipped motivational structure: we aim at the goal of correctness, but having correct judgments isn’t the point. The point is the engaged process of interpreting, investigating, and exploring the aesthetic object. Deferring to aesthetic testimony, then, makes the same mistake as looking up the answer to a puzzle, rather than solving it for oneself. The shortcut defeats the whole point. This suggests a new account of aesthetic value: the engagement account. The primary value of the activity of aesthetic appreciation lies in the process of trying to generate correct judgments, and not in having correct judgments. -/- *There is an audio version available: look for the Soundcloud link, below.*. (shrink)

I propose to study one problem for epistemic dependence on experts: how to locate experts on what I will call cognitive islands. Cognitive islands are those domains for knowledge in which expertise is required to evaluate other experts. They exist under two conditions: first, that there is no test for expertise available to the inexpert; and second, that the domain is not linked to another domain with such a test. Cognitive islands are the places where we have the fewest resources (...) for evaluating experts, which makes our expert dependences particularly risky. -/- Some have argued that cognitive islands lead to the complete unusability of expert testimony: that anybody who needs expert advice on a cognitive island will be entirely unable to find it. I argue against this radical form of pessimism, but propose a more moderate alternative. I demonstrate that we have some resources for finding experts on cognitive islands, but that cognitive islands leave us vulnerable to an epistemic trap which I will call runaway echo chambers. In a runaway echo chamber, our inexpertise may lead us to pick out bad experts, which will simply reinforce our mistaken beliefs and sensibilities. (shrink)

A few years ago a battered infant was admitted to a California hospital. After a period of observation and testing, the physicians concluded that the infant had been beaten so badly that his brain was almost completely destroyed, leaving him permanently unconscious. The hospital had just adopted a policy specifying that life-sustaining treatment for permanent unconsciousness was futile and, therefore, not indicated. According to this policy, after suitable subspecialty consultations and deliberations, including efforts to gain parental agreement and documentation of (...) unanimous ethics committee support, the patient's physician had the authority to discontinue life-sustaining treatment. The infant's physician wished to do this. The mother, however, who was the prime battery suspect, insisted that the baby be kept alive. (shrink)

Value capture occurs when an agent’s values are rich and subtle; they enter a social environment that presents simplified — typically quantified — versions of those values; and those simplified articulations come to dominate their practical reasoning. Examples include becoming motivated by FitBit’s step counts, Twitter Likes and Re-tweets, citation rates, ranked lists of best schools, and Grade Point Averages. We are vulnerable to value capture because of the competitive advantage that such crisp and clear expressions of value have in (...) our private reasoning and our public justification. There is, however, a price. In value capture, we take a central component of our autonomy — our ongoing deliberation over the exact articulation of our values — and we outsource it. And the metrics to which we outsource usually engineered for the interests of some external force, like a large-scale institution’s interest in cross-contextual comprehensibility and quick aggregability. That outsourcing cuts off one of the key benefits to personal deliberation. In value capture, we no longer adjust our values and their articulations in light of own rich experience of the world. Our values should often be carefully tailored to our particular selves or our small-scale communities, but in value capture, we buy our values off the rack. In some cases – like decreasing CO2 emissions – the costs of non-tailored values are outweighed by the benefit of precise collective coordination. In other cases, like in our aesthetic lives, they are not. This suggests that we should want different values suited to different scales. We should want value federalism. Some values are perhaps best pursued at the largest-scale level, others at smaller scales. The problem occurs when we exhibit an excess preference for the largest-scale values – when we consistently let the universal metrics swamp our quieter interests. (shrink)

We offer an account of the generic use of the term “porn”, as seen in recent usages such as “food porn” and “real estate porn”. We offer a definition adapted from earlier accounts of sexual pornography. On our account, a representation is used as generic porn when it is engaged with primarily for the sake of a gratifying reaction, freed from the usual costs and consequences of engaging with the represented content. We demonstrate the usefulness of the concept of generic (...) porn by using it to isolate a new type of such porn: moral outrage porn. Moral outrage porn is representations of moral outrage, engaged with primarily for the sake of the resulting gratification, freed from the usual costs and consequences of engaging with morally outrageous content. Moral outrage porn is dangerous because it encourages the instrumentalization of one’s empirical and moral beliefs, manipulating their content for the sake of gratification. Finally, we suggest that when using porn is wrong, it is often wrong because it instrumentalizes what ought not to be instrumentalized. (shrink)

An adequate theory of rights ought to forbid the harming of animals to promote trivial interests of humans, as is often done in the animal-user industries. But what should the rights view say about situations in which harming some animals is necessary to prevent intolerable injustices to other animals? I develop an account of respectful treatment on which, under certain conditions, it’s justified to intentionally harm some individuals to prevent serious harm to others. This can be compatible with recognizing the (...) inherent value of the ones who are harmed. My theory has important implications for contemporary moral issues in nonhuman animal ethics, such as the development of cultured meat and animal research. (shrink)

To understand the future of informed consent, we should pay attention to two ethical-legal sources in addition to the revised Common Rule. Physicians acting as investigators and patients serving as research subjects bring to that relationship a long history regarding consent to treatment, and everyone dealing with research ethics needs to be aware of the Nuremberg Code and other human-rights documents. These three streams make separate and distinctly different contributions to informed consent doctrine.

Recent conversation has blurred two very different social epistemic phenomena: echo chambers and epistemic bubbles. Members of epistemic bubbles merely lack exposure to relevant information and arguments. Members of echo chambers, on the other hand, have been brought to systematically distrust all outside sources. In epistemic bubbles, other voices are not heard; in echo chambers, other voices are actively undermined. It is crucial to keep these phenomena distinct. First, echo chambers can explain the post-truth phenomena in a way that epistemic (...) bubbles cannot. Second, each type of structure requires a distinct intervention. Mere exposure to evidence can shatter an epistemic bubble, but may actually reinforce an echo chamber. Finally, echo chambers are much harder to escape. Once in their grip, an agent may act with epistemic virtue, but social context will pervert those actions. Escape from an echo chamber may require a radical rebooting of one's belief system. (shrink)

At every moment, somewhere in the world, a group of men and women are sitting around a table deliberating about an ethical issue posed by medicine and research, whether as a research ethics committee; a hospital or clinical ethics committee; a stem‐cell review committee; a gene transfer research committee; a biobank ethics committee; an ethics advisory committee for a medical or nursing association or nongovernmental organization; a state, provincial, national, or intergovernmental bioethics committee; or an ad hoc panel examining a (...) particular development or case. However, the last national committee in the United States, the Presidential Commission for the Study of Bioethical Issues, held its final meeting at the end of August 2016 and closed its doors. Should we regret its departure? I believe that the United States would benefit from having another national bioethics advisory body, but I do not think that the commission should simply have continued under a new president in the same form. Instead, looking at the experience of that commission and its six predecessors—who they were, how they worked, the functions they served, and the problems they experienced—we can derive some useful ideas for anyone planning to build the next commission. (shrink)

What is a game? What are we doing when we play a game? What is the value of playing games? Several different philosophical subdisciplines have attempted to answer these questions using very distinctive frameworks. Some have approached games as something like a text, deploying theoretical frameworks from the study of narrative, fiction, and rhetoric to interrogate games for their representational content. Others have approached games as artworks and asked questions about the authorship of games, about the ontology of the work (...) and its performance. Yet others, from the philosophy of sport, have focused on normative issues of fairness, rule application, and competition. The primary purpose of this article is to provide an overview of several different philosophical approaches to games and, hopefully, demonstrate the relevance and value of the different approaches to each other. Early academic attempts to cope with games tried to treat games as a subtype of narrative and to interpret games exactly as one might interpret a static, linear narrative. A faction of game studies, self-described as “ludologists,” argued that games were a substantially novel form and could not be treated with traditional tools for narrative analysis. In traditional narrative, an audience is told and interprets the story, where in a game, the player enacts and creates the story. Since that early debate, theorists have attempted to offer more nuanced accounts of how games might achieve similar ends to more traditional texts. For example, games might be seen as a novel type of fiction, which uses interactive techniques to achieve immersion in a fictional world. Alternately, games might be seen as a new way to represent causal systems, and so a new way to criticize social and political entities. Work from contemporary analytic philosophy of art has, on the other hand, asked questions whether games could be artworks and, if so, what kind. Much of this debate has concerned the precise nature of the artwork, and the relationship between the artist and the audience. Some have claimed that the audience is a cocreator of the artwork, and so games are a uniquely unfinished and cooperative art form. Others have claimed that, instead, the audience does not help create the artwork; rather, interacting with the artwork is how an audience member appreciates the artist's finished production. Other streams of work have focused less on the game as a text or work, and more on game play as a kind of activity. One common view is that game play occurs in a “magic circle.” Inside the magic circle, players take on new roles, follow different rules, and actions have different meanings. Actions inside the magic circle do not have their usual consequences for the rest of life. Enemies of the magic circle view have claimed that the view ignores the deep integration of game life from ordinary life and point to gambling, gold farming, and the status effects of sports. Philosophers of sport, on the other hand, have approached games with an entirely different framework. This has lead into investigations about the normative nature of games—what guides the applications of rules and how those rules might be applied, interpreted, or even changed. Furthermore, they have investigated games as social practices and as forms of life. (shrink)

In The Case for Animal Rights, Tom Regan argues that although all subjects-of-a-life have equal inherent value, there are often differences in the value of lives. According to Regan, lives that have the highest value are lives which have more possible sources of satisfaction. Regan claims that the highest source of satisfaction, which is available to only rational beings, is the satisfaction associated with thinking impartially about moral choices. Since rational beings can bring impartial reasons to bear on decision making, (...) Regan maintains that they have an additional possible source of satisfaction that nonrational beings do not have and, consequently, the lives of rational beings turn out to have greater value.. (shrink)

Mea culpa. In 1981 the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, of which I was the Executive Director, recommended to the President and Congress that all federal departments and agencies that conduct or support human subjects research adopt “as a common core” the HHS regulations, “while permitting additions needed by any department or agency that are not inconsistent with these core provisions.” The commission believed—rightly, I still think—that having uniformity would ease (...) administration, reduce regulatory burdens, simplify oversight, and make research more efficient. Yet our naïve expectation the task could be accomplished in 180 days meant that we failed to anticipate that if it took much longer—namely, the 10 years that passed before the Common Rule was issued—federal officials would thereafter be reluctant to change the regulations and that when they tried to do so twenty years later, with the issuance of the ANPRM in 2011, they would propose comprehensive revisions. I argue that was the wrong conclusion to draw from the difficulties in issuing the first Common Rule, and that the process of producing the new “final rule” on January 19, 2017—during which many of the proposed changes were either dumped or promulgated without being adequately vetted—reinforces the conclusion that a more incremental process, with ongoing involvement of the public through an advisory body like the President's Commission, would be a much better way to proceed. (shrink)

Proposals to use organs from anencephalic infants to meet the growing need for transplantable ogans are well‐meaning but misguided. It would be unwise to amend the Uniform Determination of Death Act to classify anencephalics as “dead.” They are in the same situation as other patients (such as the permanently comatose). Likewise, amending the Anatomical Gin Act to permit organs to be removed from anencephalics would be unjust would set a bad precedent and would likely reduce overall success in this field.

Анотація. У статті проаналізовані досягнення Соціального Вчительства Католицької Церкви, репрезентовані працями Лева ХІІІ, Пія ХІ, Пія ХІІ, Івана Павла ІІ, що розкривають змістовні характеристики поняття «принцип субсидіарності», його роль і значення в системі християнських цінностей. Принцип субсидіарності робить можливими такі взаємовідносини в соціальному житті, коли спільнота вищого порядку не втручається у внутрішнє життя спільноти нижчого порядку, перебираючи на себе належні тій функції; заради спільного добра, спільного блага вона надає їй у разі потреби підтримку й допомогу, узгоджуючи у такий спосіб її (...) взаємодію з іншими соціальними структурами. Принцип субсидіарності скеровує соціальну практику на утвердження спільного блага в людському співтоваристві. Поширення і застосування принципу субсидіарності протистоїть небезпеці «одержавлення» суспільства та найзагрозливіших проявів колективізму, обмежує абсолютизацію влади, бюрократизацію державних і соціокультурних структур, стає одним із гарантів дотримання прав і свобод громадян своєї країни. (shrink)

In her BBC Reith Lectures on Trust, Onora O’Neill offers a short, but biting, criticism of transparency. People think that trust and transparency go together but in reality, says O'Neill, they are deeply opposed. Transparency forces people to conceal their actual reasons for action and invent different ones for public consumption. Transparency forces deception. I work out the details of her argument and worsen her conclusion. I focus on public transparency – that is, transparency to the public over expert domains. (...) I offer two versions of the criticism. First, the epistemic intrusion argument: The drive to transparency forces experts to explain their reasoning to non-experts. But expert reasons are, by their nature, often inaccessible to non-experts. So the demand for transparency can pressure experts to act only in those ways for which they can offer public justification. Second, the intimate reasons argument: In many cases of practical deliberation, the relevant reasons are intimate to a community and not easily explicable to those who lack a particular shared background. The demand for transparency, then, pressures community members to abandon the special understanding and sensitivity that arises from their particular experiences. Transparency, it turns out, is a form of surveillance. By forcing reasoning into the explicit and public sphere, transparency roots out corruption — but it also inhibits the full application of expert skill, sensitivity, and subtle shared understandings. The difficulty here arises from the basic fact that human knowledge vastly outstrips any individual’s capacities. We all depend on experts, which makes us vulnerable to their biases and corruption. But if we try to wholly secure our trust — if we leash groups of experts to pursuing only the goals and taking only the actions that can be justified to the non-expert public — then we will undermine their expertise. We need both trust and transparency, but they are in essential tension. This is a deep practical dilemma; it admits of no neat resolution, but only painful compromise. (shrink)

The Covid‐19 pandemic has brought bioethics back to five topics—justice, autonomy, expert authority, religion, and judicial decisions—that were central during its formative period but has cast a new light on each, while also tangling public health policy in the current, rather radical, reshaping of the role of organized religion in society.