An individual's health, genetic, or environmental-exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd-sourcing discoveries by members of the public. But these data become “immortalized” in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are matched (...) to each other. Reidentification, the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed-consent documents. At the same time, re-ID poses risks to researchers and indeed to the future of science, should re-ID end up undermining the trust and participation of potential research participants. The ethical challenges of online data sharing are heightened as so-called big data becomes an increasingly important research tool and driver of new research structures. Big data is shifting research to include large numbers of researchers and institutions as well as large numbers of participants providing diverse types of data, so the participants’ consent relationship is no longer with a person or even a research institution. In addition, consent is further transformed because big data analysis often begins with descriptive inquiry and generation of a hypothesis, and the research questions cannot be clearly defined at the outset and may be unforeseeable over the long term. In this article, we consider how expanded data sharing poses new challenges, illustrated by genomics and the transition to new models of consent. We draw on the experiences of participants in an open data platform—the Personal Genome Project—to allow study participants to contribute their voices to inform ethical consent practices and protocol reviews for big-data research. (shrink)

I argue that a standard formulation of hinge epistemology is host to epistemic relativism and show that two leading hinge approaches (Coliva’s acceptance account and Pritchard’s nondoxastic account) are vulnerable to a form of incommensurability that leads to relativism. Building on both accounts, I introduce a new, minimally epistemic conception of hinges that avoids epistemic relativism and rationally resolves hinge disagreements. According to my proposed account, putative cases of epistemic incommensurability are rationally resolvable: hinges are propositions that are the objects (...) of our belief-like attitudes and are rationally revisable in virtue of our overarching commitment to avoid systematic deception in our epistemic practices. (shrink)

I argue against the Standard View of ignorance, according to which ignorance is defined as equivalent to lack of knowledge, that cases of environmental epistemic luck, though entailing lack of knowledge, do not necessarily entail ignorance. In support of my argument, I contend that in cases of environmental luck an agent retains what I call epistemic access to the relevant fact by successfully exercising her epistemic agency and that ignorance and non-ignorance, contrary to what the Standard View predicts, are not (...) modal in the sense that knowledge is. After responding to objections, I conclude by sketching an alternative account of ignorance centered on the notions of epistemic access and epistemic agency. (shrink)

This paper argues that there are instances in which tobacco control litigation is strengthening the justiciability of the right to health and health-related rights. This is happening in different parts of the world, but in particular in Latin America. In part this is because, to a certain extent, tobacco control litigation based on fundamental rights overcomes the traditional arguments against economic, social and cultural rights adjudication: the anti-democratic argument, the lack of technical competency argument, the problem of the misallocation of (...) scarce public resources and the problem of the implementation of judicial decisions. As we analyzed in this paper, tobacco control cases based on fundamental rights are allowing courts to elaborate on broader standards of judicial adjudication of social rights, e.g., expand notions of standing, progressive realization, and state obligations enshrined in the right to health. Key to this judicial trend is the Framework Convention on Tobacco Control, which provides a legal standard — supported by scientific evidence — defining concrete measures states should take to address the tobacco epidemic, and thus giving content to the right to health as it relates to tobacco control. (shrink)

There is perhaps no area of law that so effectively protects human health and thereby advances the right to the highest attainable standard of health, as tobacco control. Globally, tobacco is responsible for 1 in 10 adult deaths, and is on track to kill 10 million people per year, mostly in developing countries, representing a US$200 billion drain on the global economy. Yet experience in recent decades has shown that a range of tobacco control measures, such as comprehensive bans on (...) smoking in public places, tobacco taxes, and limits on tobacco advertising, can greatly reduce smoking prevalence. These measures have slowly curtailed the epidemic, despite strong opposition from various sectors led by the tobacco industry. It is fitting that tobacco control is the focus of a recent, widely ratified global treaty and of increasing national litigation, often directly linked to countries’ human rights commitments. (shrink)

Recognizing the influence crises have in shaping global governance nowadays, the present work explores the possible contribution of human development thinking countering the perverse effects of shock-driven responses to major emergencies. This is done by focusing on contributions by Sen, Dreze, Haq and Stewart related to famines, violent conflict and the idea of human security, analyzed using a selection of four criteria, namely, describing the position of crisis inside human development thinking, issues of modeling and measurement, the stance toward agency, (...) and the actors gathered around the discourse. After strengths and weaknesses are considered, the article suggests a tangential involvement through other human concepts, so human development ideas do not get muddled by the logic of shocks and fulfill the great responsibility of helping us avoid the many shortfalls of a security-obsessed view of humanity. (shrink)

First published in 2001. Routledge is an imprint of Taylor & Francis, an informa company.

Drawing on detailed German panel data, we find that gifts and inheritances substantially increase households’ private pension savings in accounts which are costly or impossible to withdraw prematurely. Back-of-the-envelope calculations suggest that the average difference in bequest-induced private pension savings between heirs and non-heirs accrues to more than 40,000 euros at retirement, and that it would take an average non-heir household roughly 14 years to match this gap. The sizable difference in private pension savings between heirs and non-heirs persists when (...) we take into account other investments of heirs and non-heirs potentially intended to provide for old age. Our evidence supports the impact of gifts and inheritances on inequality in retirement wealth highlighted in recent research on intergenerational justice. We discuss several policy implications of our results. Online appendix. (shrink)

This article introduces a symposium that aims to identify and critically assess the legal strategies of the tobacco, alcohol, and food and beverage industries which rest on freedom of expression arguments.

This article provides a critical and philosophical assessment of arguments invoked for and against the constitutional protection of commercial expression and the regulation of commercial speech with a focus on the commercialization of unhealthy food products.

This article argues that the decision by the Columbian high court to totally ban the advertising and promotion of tobacco products is sound and could indeed be applied to other types of harmful products.

Research indicates the essentiality of dignity as a vital component for quality of life, reconfirming the emphasis on dignity preservation in the international code of nursing ethics. Applying Noblit and Hare’s meta-ethnography, the aim of the study was to develop a theory model by synthesizing 10 qualitative articles from various cultural contexts, exploring nurse and allied healthcare professional perception/practice concerning dignity-preserving dementia care. “Advocating the person’s autonomy and integrity,” which involves “having compassion for the person,” “confirming the person’s worthiness and (...) sense of self,” and “creating a humane and purposeful environment,” was identified as a primary foundation for dignity-preserving dementia care. “Balancing individual choices among persons no longer able to make sound decisions, against the duty of making choices on behalf of the person,” which involves “persuasion” and/or “mild restraint,” was considered a crucial aspect in certain situations. “Sheltering human worth—remembering those who forget” was identified as a comprehensive motive and core value within dignity-preserving dementia care. (shrink)

Nuclear intermolecular duplexes appear to be a general feature of nucleated cells. Most of these duplexes are formed between large RNA as well as between large and small RNA molecules. A significant portion of the large molecules belong to a special class of RNA that is restricted to the nucleus and, therefore, not designated for export. These molecules are assembled with proteins and form a structure of a higher order. The possibility that these molecules and a set of small nuclear (...) RNAs are components of a complex machine, “the transportosome”, which functions in nucleocytoplasmic traffic, is discussed. (shrink)

I want to join Dummett in saying that the reality of the past (and, by analogy, the reality of the future) is an issue of realism versus anti-realism: (Dummett 1969) If you affirm the reality of the past, you are a realist about the past. If you deny the reality of the past, you are an anti-realist about the past. (And likewise, in each case, for the future). It makes sense to think of these issues by analogy with realism about (...) the external world, unobservable objects, mathematical objects, universals, and so on. These are all properly described as ontological issues. (shrink)

Dorian Gray pays a hefty price for years of sin and vice in this completely unabridged edition of The Picture of Dorian Gray.

The COVID-19 pandemic is putting the NHS under unprecedented pressure, requiring clinicians to make uncomfortable decisions they would not ordinarily face. These decisions revolve primarily around intensive care and whether a patient should undergo invasive ventilation. Certain vulnerable populations have featured in the media as falling victim to an increasingly utilitarian response to the pandemic—primarily those of advanced years or with serious existing health conditions. Another vulnerable population potentially at risk is those who lack the capacity to make their own (...) care decisions. Owing to the pandemic, there are increased practical and normative challenges to following the requirements of the Mental Capacity Act 2005. Both capacity assessments and best interests decisions may prove more difficult in the current situation. This may create a more paternalistic situation in decisions about the care of the cognitively impaired which is at risk of taking on a utilitarian focus. We look to these issues and consider whether there is a risk of patients who lack capacity to make their own care decisions being short-changed. (shrink)

The shift towards "empirical bioethics" was largely triggered by a recognition that stakeholders' views and experiences are vital in ethical analysis where one hopes to produce practicable recommendations. Such perspectives can provide a rich resource in bioethics scholarship, perhaps challenging the researcher's perspective. However, overreliance on a picture painted by a group of research participants—or on pre‐existing literature in that field—can lead to a biased view of a given context, as the subjectivity of data generated in these ways cannot (and (...) should not wholly) be escaped. In response, we propose the implementation of a complementary approach of ethno‐immersion in bioethics research. By positioning oneself in the context being researched, the researcher can better understand the realities of that context. The researcher's understanding will, naturally, be subjective too. However, it will act as a better developed and more informed outsider view, when considering the picture painted by participants and previous studies, thus enabling the researcher to introduce more nuance when analysing data. We introduce this approach after examining what we call the context detachment problem, whereby some bioethics scholarship—empirical or otherwise—fails to reflect the reality of the healthcare setting it concerns. Our proposed ethno‐immersion (which differs from formal ethnography) is then explored as a response, highlighting its benefits, and answering the question of timing within a research project. Finally, we reflect on the applicability of our proposal to non‐empirical bioethics scholarship, concluding that it remains important but may require some adjustments. (shrink)

Technology presents a means of improving health outcomes for vast numbers of individuals. It has historically been deployed to streamline healthcare delivery and reach those who would previously have faced obstacles to accessing services. It has also enabled improved health education and management. Telemedicine can be employed in everything from primary care consultations to the monitoring of chronic diseases. Despite recommendation by the World Health Organization, countries have been slow to embrace such technology in the health sector. Nonetheless, it is (...) expected to become more prevalent with increased digitization. Further, amidst the COVID‐19 pandemic, there was a rush to implement forms of telemedicine where possible to prevent patients breaking social distancing rules. In this paper, I present and defend what I term the ‘telemedical imperative’. The telemedical imperative represents a duty for healthcare systems to implement remote access to services where possible, thereby furthering the mission of equity in access to healthcare. It is intended as an addition to in‐person services rather than a replacement. After highlighting the benefits of telemedicine, I provide four criteria that must be met for the telemedical imperative to arise. The first three—safety, effectiveness, and acceptability—are consistent and essential. The fourth adapts to the service in question and requires that there be no other obstacles specific to that service that cannot reasonably be overcome. Finally, I address several potential objections to the telemedical imperative based on more general concerns around the implementation of telemedicine. (shrink)

Direct-to-consumer genetic testing is a growing phenomenon, fuelled by the notion that knowledge equals control. One ethical question that arises concerns the proband’s duty to share information indicating genetic risks in their relatives. However, such duties are unenforceable and may result in the realisation of anticipated harm to relatives. We argue for a shift in responsibility from proband to provider, placing a duty on test providers in the event of identified actionable risks to relatives. Starting from Parker and Lucassen’s 'joint (...) account model', we adapt Kilbride’s application of the rule of rescue and balance it against the relative’s right not to know, placing responsibility on the providers of direct-to-consumer genetic testing. Where the risk of disease to a relative is actionable, we argue providers ought to share results even in the face of the proband’s objections. Confidentiality issues are navigated by a pre-emptive consent model, whereby consumers agree to the sharing of certain information with their relatives ahead of testing and as a condition of testing. When a relative is informed, the proband’s privacy is protected by maximal deidentification, and the rights of the relative are met by a stepwise approach to informing that allows them to decide how much information they receive. (shrink)

If the former is the case, let us say that anti-reductionism about relational facts is true; if the latter, that reductionism about relational facts is true. Let us say that a fact is relational if it makes true some relational proposition (a proposition that asserts that a relation holds between some objects1), that it is irreducibly relational if, in addition, it does not make true any nonrelational propositions, and that it is monadic if it is not irreducibly relational (if it (...) makes true some proposition that does not assert that a relation holds between some objects). (shrink)

Volume 20, Issue 7, July 2020, Page 199-201.

BackgroundChronic kidney disease is a significant cause of global deaths. Those who progress to end-stage kidney disease often commence dialysis as a life-extending treatment. For cognitively impaired patients, the decision as to whether they commence dialysis will fall to someone else. This scoping review was conducted to map existing literature pertaining to how decisions about dialysis are and should be made with, for, and on behalf of adult patients who lack decision-making capacity. In doing so, it forms the basis of (...) a larger body of work that is exploring how these decisions ought to be made.MethodsTo identify relevant papers, searches were conducted on Ovid MEDLINE(R), Embase, PsychINFO, The Cochrane Library, and Web of Science. Inclusion criteria were then applied, requiring that papers: report on empirical studies about how decisions about dialysis are made and/or discuss how decisions about dialysis should be made with, for, and on behalf of adult patients who lack decision-making capacity; be published from 1961 onwards; and be published in English. This resulted in 27 papers eligible for inclusion.ResultsOf note, the majority of papers originated in the United States. There was wide variation across the included papers. Extracted data were grouped under the following themes: involving various parties (patient involvement, family dominance, and wider communication); objectivity about care options (including difficulties with family detachment); cultural sensitivity; medical versus non-medical factors; managing nonadherent patients; and the role and prevalence of substituted judgement. The literature shows that there is inconsistency in the principles and processes surrounding decisions made about dialysis with, for, and on behalf of adult patients who lack decision-making capacity.ConclusionsThis scoping review demonstrates that there is significant variation in both the practice and theory of dialysis decision making with, for, and on behalf of cognitively impaired adult patients. Complexity arises in considering who should get a say, how influential their say should be in a decision, and what factors are most relevant to the decision. A lack of up-to-date literature exploring this issue is highlighted, with this scoping review providing a useful groundwork from which further research can be undertaken. (shrink)

Sound moves us. Nowhere is this more apparent than in our responses to genuine emotional vocalizations, be they heartfelt distress cries or raucous laughter. Here, we present perceptual ratings and a description of a freely available, large database of natural affective vocal sounds from human infants, adults and domestic animals, the Oxford Vocal (OxVoc) Sounds database. This database consists of 173 non-verbal sounds expressing a range of happy, sad, and neutral emotional states. Ratings are presented for the sounds on a (...) range of dimensions from a number of independent participant samples. Perceptions related to valence, including distress, vocalizer mood, and listener mood are presented in Study 1. Perceptions of the arousal of the sound, listener motivation to respond and valence (positive, negative) are presented in Study 2. Perceptions of the emotional content of the stimuli in both Study 1 and 2 were consistent with the predefined categories (e.g., laugh stimuli perceived as positive). While the adult vocalizations received more extreme valence ratings, rated motivation to respond to the sounds was highest for the infant sounds. The major advantages of this database are the inclusion of vocalizations from naturalistic situations, which represent genuine expressions of emotion, and the inclusion of vocalizations from animals and infants, providing comparison stimuli for use in cross-species and developmental studies. The associated website provides a detailed description of the physical properties of each sound stimulus along with cross-category descriptions. (shrink)

Access to abortion care has been hugely affected by the COVID-19 pandemic. This has prompted several governments to permit the use of telemedicine for fully remote care pathways, thereby ensuring pregnant people are still able to access services. One such government is that of England, where these new care pathways have been publicly scrutinised. Those opposed to telemedical early medical abortion care have raised myriad concerns, though they largely centre on matters of patient safeguarding. It is argued that healthcare professionals (...) cannot adequately carry out their safeguarding duties if the patient is not in the room with them. These concerns lack empirical support. Emerging evidence suggests that safeguarding processes may, in fact, be more effective within telemedical abortion care pathways. In this article, we address two specific safeguarding concerns: (1) that a remote consultation prevents a healthcare professional from identifying instances of abuse, and (2) that healthcare professionals cannot reliably confirm the absence of coercion during a remote consultation. We demonstrate that such concerns are misplaced, and that safeguarding may actually be improved in telemedical care pathways as victims of abuse may find it easier to engage with services. It is inevitable that some individuals will fall through the net, but this is unavoidable even with in-person care and thus does not constitute a strong critique of the use of telemedicine in abortion care. These safeguarding concerns set aside, then, we argue that the current approval that enables telemedical early medical abortion should be afforded permanence. (shrink)