Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.
Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
The purpose of this study was to illuminate the ethically difficult situations experienced by care providers working in a nursing home. Individual interviews using a narrative approach were conducted. A phenomenological-hermeneutic method developed for researching life experience was applied in the analysis. The findings showed that care providers experience ethical challenges in their everyday work. The informants in this study found the balance between the ideal, autonomy and dignity to be a daily problem. They defined the culture they work in (...) as not supportive. They also thought they were not being seen and heard in situations where they disagree with the basic values of the organization. The results are discussed in terms of Habermas’s understanding of modern society. Care settings for elderly people obviously present ethical challenges, particularly in the case of those suffering from dementia. The care provider participants in this study expressed frustration and feelings of powerlessness. It is possible to understand their experiences in terms of Habermas’s theory of modern society and the concept of the system’s colonization of the life world. (shrink)
In this paper, I consider the claim that a corporation cannot be held to be morally responsible unless it is a person. First, I argue that this claim is ambigious. Person flags three different but related notions: metaphysical person, moral agent, moral person. I argue that, though one can make the claim that corporates are metaphysical persons, this claim is only marginally relevant to the question of corporate moral responsibility. The central question which must be answered in discussions of corporate (...) moral responsibility is whether corporations are moral agents or moral persons. I argue that, though we can make a case for saying corporations are moral agents, they are not moral persons, and hence, we can hold them responsible. In addition, we need not treat them the way we would be obligated to treat a moral person; we needn't have the same scruples about holding a corporation morally responsible as we would a moral person. (shrink)
Anthropology combines two quite different enterprises: the ethnographic study of particular people in particular places and the theorizing about the human species. As such, anthropology is part of cognitive science in that it contributes to the unitary theoretical aim of understanding and explaining the behavior of the animal species Homo sapiens. This article draws on our own research experience to illustrate that cooperation between anthropology and the other sub-disciplines of cognitive science is possible and fruitful, but it must proceed from (...) the recognition of anthropology’s unique epistemology and methodology. (shrink)
The doctor patient relationship starts with a story. Doctors' notes, a patient's chart, the recommendations of ethics committees and insurance justifications all hinge on written and verbal narrative interaction. The "practice" of narrative profoundly affects decision making, patient health and treatment and the everyday practice of medicine. In this edited collection, the contributors provide conceptual foundations, practical guidelines and theoretical considerations central to the practice of narrative ethics.
Proposing that the interaction between reader and literature involves four “modes of textual engagement” — recognition, enchantment, knowledge, and shock — The Uses of Literature bridges the gap between literary theory and common-sense beliefs about why we read literature.
In this paper, I survey liberal and communitarian defenses of privacy, paying particular attention to defenses of privacy in the workplace. I argue that liberalism cannot explain all our of intuitions about the wrongness of workplace invasions of privacy. Communitarianism, on the other hand, is able to account for these intuitions.
The analysis of social networks has remained a crucial and yet understudied aspect of the efforts to measure Triple Helix linkages. The Triple Helix model aims to explain, among other aspects of knowledge-based societies, “the current research system in its social context” (Etzkowitz and Leydesdorff 2000:109). This paper develops a novel approach to study the research system from the perspective of the individual, through the analysis of the relationships among researchers, and between them and other social actors. We develop a (...) new set of techniques and show how they can be applied to the study of a specific case (a group of academics within a university department). We analyse their informal social networks and show how a relationship exists between the characteristics of an individual’s network of social links and his or her research output. (shrink)
About 2 million minor children in the U.S. have at least one parent incarcerated for criminal offenses. There are about 33,000 undocumented persons detained by Immigration and Customs Enforcement in jails and federal detention centers around the country, and 79% of the minor children of these detainees are U.S. citizens. There are few government programs that measure and respond to the harm caused to these children by the incarceration and detention of their parents, and the negative effects on these children (...) are largely ignored in public policy debates about incarceration and immigration detention. I argue that we have an obligation to these children based on the special status of children, the harm caused to children by the arrest, detention and incarceration of their parents, current incarceration and detention policies even in the presence of alternatives that would, on balance, create less harm. (shrink)
The doctrine of double effect has a firm, respected position within Roman Catholic medical ethics. In addition, public debate often incorporates this doctrine when determining the acceptability of certain actions. This essay examines and assesses the application of this doctrine to end-of-life decisions. National Catholic Bioethics Quarterly 11.1 : 99–119.
In contemporary liberal ethics patient autonomy is often interpreted as the right to self-determination: when it comes to treatment decisions, the patient is given the right to give or withhold informed consent. This paper joins in the philosophical and ethical criticism of the liberal interpretation as it does not regard patient autonomy as a right, rule or principle, but rather as a practice. Patient autonomy, or so I will argue, is realised in the concrete activities of day-to-day health care, in (...) the material and technological context of care, in arrangements of health care institutions, in the physical training of people with disabilities, as well as in the concrete activities of care-giving. This move from conversations in the consultation room to other sites and situations in the practice of care takes seriously the empirical reality of medical care and intends to show that patient autonomy is practically realised in a much richer and more creative way than most ethical theory seems to assume. (shrink)
We welcome the critical appraisal of the database used by the behavioral sciences, but we suggest that the authors' differentiation between variable and universal features is ill conceived and that their categorization of non-WEIRD populations is misleading. We propose a different approach to comparative research, which takes population variability seriously and recognizes the methodological difficulties it engenders.
The purpose of this paper is twofold: first we outline a version of non-descriptivism, ‘minimal expressivism’, leaving aside certain long-standing problems associated with conventional expressivist views. Second, we examine the way in which familiar expressivist results can be accommodated within this framework, through a particular interpretation that the expressive realm lends to a theory of meaning. Expressivist theories of meaning address only a portion of the classical problems attributed to this position when they seek to explain why the expressions they (...) deal with have a given meaning. A position can nevertheless be termed ‘expressivist’ – in the minimal sense that we favor – based simply on the following key features of the meaning of these expressions: they can be used as functions of propositions, and they are not used to describe the way the world is. (shrink)