This article considers the issue of opacity as a problem for socially consequential mechanisms of classification and ranking, such as spam filters, credit card fraud detection, search engines, news trends, market segmentation and advertising, insurance or loan qualification, and credit scoring. These mechanisms of classification all frequently rely on computational algorithms, and in many cases on machine learning algorithms to do this work. In this article, I draw a distinction between three forms of opacity: opacity as intentional corporate or state (...) secrecy, opacity as technical illiteracy, and an opacity that arises from the characteristics of machine learning algorithms and the scale required to apply them usefully. The analysis in this article gets inside the algorithms themselves. I cite existing literatures in computer science, known industry practices, and do some testing and manipulation of code as a form of lightweight code audit. I argue that recognizing the distinct forms of opacity that may be coming into play in a given application is a key to determining which of a variety of technical and non-technical solutions could help to prevent harm. (shrink)

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical data donation. (...) Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code. (shrink)

This work fulfills the need for a conceptual and technical framework to improve understanding of Information Quality (IQ) and Information Quality standards. The meaning and practical implementation of IQ are addressed, as it is relevant to any field where there is a need to handle data and issues such as accessibility, accuracy, completeness, currency, integrity, reliability, timeliness, usability, the role of metrics and so forth are all a part of Information Quality. -/- In order to support the cross-fertilization of theory (...) and practice, the latest research is presented in this book. The perspectives of experts from beyond the origins of IQ in computer science are included: library and information science practitioners and academics, philosophers of information, of engineering and technology, and of science are all contributors to this volume. -/- The chapters in this volume are based on the work of a collaborative research project involving the Arts and Humanities Research Council and Google and led by Professor Luciano Floridi, University of Oxford. -/- This work will be of interest to anyone handling data, including those from commercial, public, governmental and academic organizations. The expert editors’ contributions introduce issues of interest to scientists, database curators and philosophers, even though the issues may be disguised in the language and examples common to a different discipline. (shrink)

Online technologies enable vast amounts of data to outlive their producers online, thereby giving rise to a new, digital form of afterlife presence. Although researchers have begun investigating the nature of such presence, academic literature has until now failed to acknowledge the role of commercial interests in shaping it. The goal of this paper is to analyse what those interests are and what ethical consequences they may have. This goal is pursued in three steps. First, we introduce the concept of (...) the Digital Afterlife Industry, and define it as an object of study. Second, we identify the politico-economic interests of the DAI. For this purpose, we develop an analytical approach based on an informational interpretation of Marxian economics. Third, we explain the practical manifestations of the interests using four real life cases. The findings expose the incentives of the DAI to alter what is referred to as the “informational bodies” of the dead, which in turn is to be seen as a violation of the principle of human dignity. To prevent such consequences, we argue that the ethical conventions that guide trade with remains of organic bodies may serve as a good model for future regulation of DAI. (shrink)

The adoption of web-based telecare services has raised multifarious ethical concerns, but a traditional principle-based approach provides limited insight into how these concerns might be addressed and what, if anything, makes them problematic. We take an alternative approach, diagnosing some of the main concerns as arising from a core phenomenon of shifting trust relations that come about when the physician plays a less central role in the delivery of care, and new actors and entities are introduced. Correspondingly, we propose an (...) applied ethics of trust based on the idea that patients should be provided with good reasons to trust telecare services, which we call sound trust. On the basis of this approach, we propose several concrete strategies for safeguarding sound trust in telecare. (shrink)

This article provides a concise overview of the history of scholarship on solidarity in Europe and North America. While recent decades have seen an increase in conceptual and scholarly interest in solidarity in North America and other parts of the Anglo-Saxon world, the concept is much more strongly anchored in Europe. Continental European politics in particular have given rise to two of the most influential traditions of solidarity, namely, socialism and Christian ethics. Solidarity has also guided important public instruments and (...) institutions in Europe. Despite the much stronger affinity of continental European societies to solidaristic thinking, we argue that solidarity has much to offer for addressing societal challenges on both sides of the Atlantic and beyond. After proposing a working definition of solidarity that highlights its utility for guiding policy and practice, we give an example of how a solidarity-based perspective can shape instruments for the governance of data use. (shrink)

In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer.

Daniel Sperling discusses the legal status of posthumous interests and their possible defeat by actions performed following the death of a person. The author first explores the following questions: Do the dead have interests and/or rights, the defeat of which may constitute harm? What does posthumous harm consist of and when does it occur, if at all? This is followed by a more detailed analysis of three categories of posthumous interests arising in the medico-legal context: the proprietary interest in the (...) body of the deceased, the testamentary interest in determining the disposal of one's body after death and the interest in post-mortem medical confidentiality. Sperling concludes that if we acknowledge the interest in one's symbolic existence and legally protect it, not only do some interests survive a person's death but we should also enjoy a peremptory legal power to shape in advance our symbolic existence after death. (shrink)

Effective altruists recommend that we give large sums to charity, but by far their more central message is that we give effectively, i.e., to whatever charities would do the most good per dollar donated. In this paper, I’ll assume that it’s not wrong not to give bigger, but will explore to what extent it may well nonetheless be wrong not to give better. The main claim I’ll argue for here is that in many cases it would be wrong of you (...) to give a sum of money to charities that do less good than others you could have given to instead, even if it would not have been wrong of you not to give the money to any charity at all. I assume that all the charities under discussion here do positive good overall, do not cause harm, do not infringe rights, etc. What makes my main claim here particularly interesting is that it is inconsistent with what appears to be a fairly common assumption in the ethics of giving, according to which if it is not wrong of you to keep some sum of money for yourself, then it is likewise not wrong of you to donate it to any particular charity you choose. Roughly: if it’s up to you whether to donate the money, it’s also up to you where to donate the money. I challenge this common assumption. (shrink)

In this essay, we explore an issue of moral uncertainty: what we are permitted to do when we are unsure about which moral principles are correct. We develop a novel approach to this issue that incorporates important insights from previous work on moral uncertainty, while avoiding some of the difficulties that beset existing alternative approaches. Our approach is based on evaluating and choosing between option sets rather than particular conduct options. We show how our approach is particularly well-suited to address (...) this issue of moral uncertainty with respect to agents that have credence in moral theories that are not fully consequentialist. (shrink)

Charles Taylor has been one of the most original and influential figures in contemporary philosophy: his 'philosophical anthropology' spans an unusually wide range of theoretical interests and draws creatively on both Anglo-American and Continental traditions in philosophy. A selection of his published papers is presented here in two volumes, structured to indicate the direction and essential unity of the work. He starts from a polemical concern with behaviourism and other reductionist theories which aim to model the study of man on (...) the natural sciences. This leads to a general critique of naturalism, its historical development and its importance for modern culture and consciousness; and that in turn points, forward to a positive account of human agency and the self, the constitutive role of language and value, and the scope of practical reason. The volumes jointly present some two decades of work on these fundamental themes, and convey strongly the tenacity, verve and versatility of the author in grappling with them. They will interest a very wide range of philosophers and students of the human sciences. (shrink)

From the ethicist the_ New Yorker_ calls “the most influential living philosopher,” a new way of thinking about living ethically.

Behavioral scientists routinely publish broad claims about human psychology and behavior in the world's top journals based on samples drawn entirely from Western, Educated, Industrialized, Rich, and Democratic (WEIRD) societies. Researchers – often implicitly – assume that either there is little variation across human populations, or that these “standard subjects” are as representative of the species as any other population. Are these assumptions justified? Here, our review of the comparative database from across the behavioral sciences suggests both that there is (...) substantial variability in experimental results across populations and that WEIRD subjects are particularly unusual compared with the rest of the species – frequent outliers. The domains reviewed include visual perception, fairness, cooperation, spatial reasoning, categorization and inferential induction, moral reasoning, reasoning styles, self-concepts and related motivations, and the heritability of IQ. The findings suggest that members of WEIRD societies, including young children, are among the least representative populations one could find for generalizing about humans. Many of these findings involve domains that are associated with fundamental aspects of psychology, motivation, and behavior – hence, there are no obviousa priorigrounds for claiming that a particular behavioral phenomenon is universal based on sampling from a single subpopulation. Overall, these empirical patterns suggests that we need to be less cavalier in addressing questions ofhumannature on the basis of data drawn from this particularly thin, and rather unusual, slice of humanity. We close by proposing ways to structurally re-organize the behavioral sciences to best tackle these challenges. (shrink)

The phenomenon of distributed knowledge is well-known in epistemic logic. In this paper, a similar phenomenon in ethics, somewhat neglected so far, is investigated, namely distributed morality. The article explains the nature of distributed morality, as a feature of moral agency, and explores the implications of its occurrence in advanced information societies. In the course of the analysis, the concept of infraethics is introduced, in order to refer to the ensemble of moral enablers, which, although morally neutral per se, can (...) significantly facilitate or hinder both positive and negative moral behaviours. (shrink)

Acting Now to End World Poverty Peter Singer. were our own, and we cannot deny that the suffering and death are bad. The second premise is also very difficult to reject, because it leaves us some wiggle room when it comes to situations in.

Role of the entrepreneur in a distinct role of profit.

Sanford Goldberg investigates the role that others play in our attempts to acquire knowledge of the world.

The issue of directed donation of organs from deceased donors for transplantation has recently risen to the fore, given greater significance by the relatively stagnant rate of deceased donor donation in the UK. Although its status and legitimacy is explicitly recognized across the USA, elsewhere a more cautious, if not entirely negative, stance has been taken. In England, Wales and Northern Ireland, the Human Tissue Act 2004, and in Scotland the Human Tissue (Scotland) Act 2006, are both silent in this (...) regard. Although so-called conditional donation, donation to (or perhaps withheld from) a specific class, has been outlawed as a product of guidance issued by the Secretary of State for Health issued in the wake of the controversial incident occurring in the North of England in 1998, its intended application to ‘directed’ donation is less certain. Directed and conditional donations challenge the traditional construct of altruistic donation and impartial (equitable) allocation in a very immediate and striking fashion. They implicitly raise important questions as to whether the body or parts of the body are capable of being owned, and by whom. This paper attempts to explore the notion of donor ownership of body parts and its implications for both directed and conditional donation. (shrink)

Biomedical research is so important that there is a positive moral obligation to pursue it and to participate in itScience is under attack. In Europe, America, and Australasia in particular, scientists are objects of suspicion and are on the defensive.i“Frankenstein science”5–8 is a phrase never far from the lips of those who take exception to some aspect of science or indeed some supposed abuse by scientists. We should not, however, forget the powerful obligation there is to undertake, support, and participate (...) in scientific research, particularly biomedical research, and the powerful moral imperative that underpins these obligations. Now it is more imperative than ever to articulate and explain these obligations and to do so is the subject and the object of this paper.Let me present the question in its starkest form: is there a moral obligation to undertake, support and even to participate in serious scientific research? If there is, does that obligation require not only that beneficial research be undertaken but also that “we”, as individuals and “we” as societies be willing to support and even participate in research where necessary?Thus far the overwhelming answer given to this question has been “no”, and research has almost universally been treated with suspicion and even hostility by the vast majority of all those concerned with the ethics and regulation of research. The so called “precautionary approach”9 sums up this attitude, requiring dangers to be considered more likely and more serious than benefits, and assuming that no sane person would or should participate in research unless they had a pressing personal reason for so doing, or unless they were motivated by a totally impersonal altruism. International agreements and protocols—for example, the Declaration of Helsinki10 and the CIOMS Guidelines11—have been directed principally at …. (shrink)

oise Baylis, 1234 Le Marchant Street, Halifax, Nova Scotia, Canada B3H 3P7. Tel.: (902)-494–2873; Fax: (902)-494-2924; Email: francoise.baylis{at}dal.ca ' + u + '@' + d + ' '//--> . Abstract Recently, there has been a growing interest in public health and public health ethics. Much of this interest has been tied to efforts to draw up national and international plans to deal with a global pandemic. It is common for these plans to state the importance of drawing upon a well-developed (...) ethics framework and we argue that this framework should reflect the values and insights of feminist relational theory. More specifically, we argue that pandemic planning must be squarely situated in the larger realm of public health and that an ethics framework for public health will be one that recognizes the need to pay particular attention to the vulnerability of subpopulations lacking in social and economic power. We propose an ethics framework for public health that builds on the notions of relational personhood (including relational autonomy and social justice) and relational solidarity. In this way, we aim for a public health ethics that, as appropriate, promotes the public interest and the common good. CiteULike Connotea Del.icio.us What's this? (shrink)

Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (shrink)

Informed consent is a central topic in contemporary biomedical ethics. Yet attempts to set defensible and feasible standards for consenting have led to persistent difficulties. In Rethinking Informed Consent in Bioethics Neil Manson and Onora O'Neill set debates about informed consent in medicine and research in a fresh light. They show why informed consent cannot be fully specific or fully explicit, and why more specific consent is not always ethically better. They argue that consent needs distinctive communicative transactions, by which (...) other obligations, prohibitions, and rights can be waived or set aside in controlled and specific ways. Their book offers a coherent, wide-ranging and practical account of the role of consent in biomedicine which will be valuable to readers working in a range of areas in bioethics, medicine and law. (shrink)

This collection of original essays explores the social and relational dimensions of individual autonomy. Rejecting the feminist charge that autonomy is inherently masculinist, the contributors draw on feminist critiques of autonomy to challenge and enrich contemporary philosophical debates about agency, identity, and moral responsibility. The essays analyze the complex ways in which oppression can impair an agent's capacity for autonomy, and investigate connections, neglected by standard accounts, between autonomy and other aspects of the agent, including self-conception, self-worth, memory, and the (...) imagination. (shrink)

Immanuel Kant's Groundwork of the Metaphysics of Morals ranks alongside Plato's Republic and Aristotle's Nicomachean Ethics as one of the most profound and influential works in moral philosophy ever written. In Kant's own words its aim is to search for and establish the supreme principle of morality, the categorical imperative. Kant argues that every human being is an end in himself or herself, never to be used as a means by others, and that moral obligation is an expression of the (...) human capacity for autonomy or self-government. This edition presents the acclaimed translation of the text by Mary Gregor, together with an introduction by Christine M. Korsgaard that examines and explains Kant's argument. (shrink)

In recent years, virtue theories have enjoyed a renaissance of interest among general and medical ethicists. This book offers a virtue-based ethic for medicine, the health professions, and health care. Beginning with a historical account of the concept of virtue, the authors construct a theory of the place of the virtues in medical practice. Their theory is grounded in the nature and ends of medicine as a special kind of human activity. The concepts of virtue, the virtues, and the virtuous (...) physician are examined along with the place of the virtues of trust, compassion, prudence, justice, courage, temperance, and effacement of self-interest in medicine. The authors discuss the relationship between and among principles, rules, virtues, and the philosophy of medicine. They also address the difference virtue-based ethics makes in confronting such practical problems as care of the poor, research with human subjects, and the conduct of the healing relationship. This book woith the author's previous volumes, A Philosophical Basis of Medical Practice and For the Patient's Good, are part of their continuing project of developing a coherent moral philosophy of medicine. (shrink)

Can we decide to trust? Sometimes, yes. And when we do, we need not believe that our trust will be vindicated. This paper is motivated by the need to incorporate these facts into an account of trust. Trust involves reliance; and in addition it requires the taking of a reactive attitude to that reliance. I explain how the states involved here differ from belief. And I explore the limits of our ability to trust. I then turn to the idea of (...) trusting what others say. I suggest that we sometimes decide to trust people to be sincere and knowledgeable; and that having taken this attitude towards them, we come to believe what they say. I spell out some consequences that this has for an account of testimony, and for van Fraassen's decision theoretic principle of Reflection. (shrink)

This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...) new solutions to complex ethical and regulatory questions, ranging from caring for people at the end of their lives to improving policies for organ donation and better governance of health data. It also underscores the importance of universal health care. Although a solidarity-based perspective does not require health to be seen as an individually enforceable right, it does influence our understanding of individual rights: it draws attention to how their meaning is shaped by shared social practices. I conclude by arguing that, in light of current pressures for medicine to become more personalized, using a relational understanding of personhood to shape policies and practices is a much needed endeavor. (shrink)

Biomedical innovation and translation are increasingly emphasizing research using “big data.” The hope is that big data methods will both speed up research and make its results more applicable to “real-world” patients and health services. While big data research has been embraced by scientists, politicians, industry, and the public, numerous ethical, organizational, and technical/methodological concerns have also been raised. With respect to technical and methodological concerns, there is a view that these will be resolved through sophisticated information technologies, predictive algorithms, (...) and data analysis techniques. While such advances will likely go some way towards resolving technical and methodological issues, we believe that the epistemological issues raised by big data research have important ethical implications and raise questions about the very possibility of big data research achieving its goals. (shrink)

Michael J. Zimmerman offers a conceptual analysis of the moral ‘ought’ that focuses on moral decision-making under uncertainty. His central case, originally presented by Frank Jackson, concerns a doctor who must choose among three treatments for a minor ailment. Her evidence suggests that drug B will partially cure her patient, that one of either drug A or C would cure him completely, but that the other drug would kill him. Accepting the intuition that the doctor ought to choose drug B, (...) Zimmerman argues that moral obligation consists in performing the action that is ‘prospectively best,’ that is ‘that which, from the moral point of view, it is most reasonable for the agent to choose’ given the evidence available to her at the time.Zimmerman defends his Prospective View of moral obligation against two main competitors in the long, first chapter of the book. According to the Objective View, a person ought to choose what is, in fact, the best option. The doctor ought to give her patient whichever drug will actually cure him. The fact that the doctor cannot know whether this is drug …. (shrink)

The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications (...) of Big Data lags behind. In order to bridge such a gap, this article systematically and comprehensively analyses academic literature concerning the ethical implications of Big Data, providing a watershed for future ethical investigations and regulations. Particular attention is paid to biomedical Big Data due to the inherent sensitivity of medical information. By means of a meta-analysis of the literature, a thematic narrative is provided to guide ethicists, data scientists, regulators and other stakeholders through what is already known or hypothesised about the ethical risks of this emerging and innovative phenomenon. Five key areas of concern are identified: informed consent, privacy, ownership, epistemology and objectivity, and ‘Big Data Divides’ created between those who have or lack the necessary resources to analyse increasingly large datasets. Critical gaps in the treatment of these themes are identified with suggestions for future research. Six additional areas of concern are then suggested which, although related have not yet attracted extensive debate in the existing literature. It is argued that they will require much closer scrutiny in the immediate future: the dangers of ignoring group-level ethical harms; the importance of epistemology in assessing the ethics of Big Data; the changing nature of fiduciary relationships that become increasingly data saturated; the need to distinguish between ‘academic’ and ‘commercial’ Big Data practices in terms of potential harm to data subjects; future problems with ownership of intellectual property generated from analysis of aggregated datasets; and the difficulty of providing meaningful access rights to individual data subjects that lack necessary resources. Considered together, these eleven themes provide a thorough critical framework to guide ethical assessment and governance of emerging Big Data practices. (shrink)

In 2007, the Ethics and Governance Council of the UK Biobank commissioned a Report on ‘Concepts of Public Good and Pubic Interest in Access Policies’. This study considered the Biobank’s role as a ‘public good’ in respect to supporting and promoting health throughout society. However, the conditions under which access by third parties to UK Biobank are justified in the public interest have not been well considered. In this article, I propose to analyse the conditions that should allow such access. (...) My argument develops UK Biobank’s function as a ‘public good’ and in terms of its responsibilities as a public health institution; both to protect the rights of the participants and in having a role in reinforcing public goals. Although these two tasks may conflict, it is possible that resolute opposition to some third-party access demands—if properly justified in terms of a public interest—will be damaging to, rather than protective of, participants’ rights. To illustrate my argument, I consider the appropriate response to an extraordinary public emergency , such as a serious criminal investigation or disaster response, in terms of an ethical access policy. (shrink)

Paul Faulkner presents a new theory of testimony - the basis of much of what we know. He addresses the questions of what makes it reasonable to accept a piece of testimony, and what warrants belief formed on that basis. He rejects rival theories and argues that testimonial knowledge and testimonially warranted belief are based on trust.

In biobanks, a broader model of consent is often used and justified by a range of different strategies that make reference to the potential benefits brought by the research it will facilitate combined with the low level of risk involved (provided adequate measures are in place to protect privacy and confidentiality) or a questioning of the centrality of the notion of informed consent. Against this, it has been suggested that the lack of specific information about particular uses of the samples (...) means that such consent cannot be fully autonomous and so is unethical. My answer to the title question is a definite ‘yes’. Broad consent can be informed consent and is justified by appeal to the principle of respect for autonomy. Indeed, I will suggest that the distinction between the various kinds of consent is not a distinction between kinds of consent but between the kinds of choice a person makes. When an individual makes a choice (of any kind) it is important that they do so according to the standards of informed consent and consistent with the choice that they are making. (shrink)

In recent years, the free market position has been gaining strength. In this book, Radin provides a nuanced response to its sweeping generalization.

Introduction -- Recognition as identification -- recognizing oneself -- Mutal recognition -- Conclusion: A review.

We are often uncertain how to behave morally in complex situations. In this controversial study, Ted Lockhart contends that moral philosophy has failed to address how we make such moral decisions. Adapting decision theory to the task of decision-making under moral uncertainly, he proposes that we should not always act how we feel we ought to act, and that sometimes we should act against what we feel to be morally right. Lockhart also discusses abortion extensively and proposes new ways to (...) deal with the ethical and moral issues which surround it. (shrink)

A reprint of Maritain's classic reflection on social and political issues.

How should deontologists concerned with the ethics of killing apply their moral theory when we don’t know all the facts relevant to the permissibility of our action? Though the stakes couldn’t be higher, and uncertainty is endemic where killing is concerned, few deontologists have an answer to this question. In this paper I canvass two possibilities: that we should apply a threshold standard, equivalent to the ‘beyond a reasonable doubt’ standard applied for criminal punishment; and that we should fit our (...) deontological ethical theory into the apparatus of decision theory. I show that the first approach faces insurmountable obstacles, while the second holds much more promise for deontologists than they might first have assumed. (shrink)

Self-tracking devices point to a future in which individuals will be more involved in the management of their health and will generate data that will benefit clinical decision making and research. They have thus attracted enthusiasm from medical and public health professionals as key players in the move toward participatory and personalized healthcare. Critics, however, have begun to articulate a number of broader societal and ethical concerns regarding self-tracking, foregrounding their disciplining, and disempowering effects. This paper has two aims: first, (...) to analyze some of the key promises and concerns that inform this polarized debate. I argue that far from being solely about health outcomes, this debate is very much about fundamental values that are at stake in the move toward personalized healthcare, namely, the values of autonomy, solidarity, and authenticity. The second aim is to provide a framework within which an alternative approach to self-tracking for health can be developed. I suggest that a practice-based approach, which studies how values are enacted in specific practices, can open the way for a new set of theoretical questions. In the last part of the paper, I sketch out how this can work by describing various enactments of autonomy, solidarity, and authenticity among self-trackers in the Quantified Self community. These examples show that shifting attention to practices can render visible alternative and sometimes unexpected enactments of values. Insofar as these may challenge both the promises and concerns in the debate on self-tracking for health, they can lay the groundwork for new conceptual interventions in future research. (shrink)

The Mental Capacity Act 2005 has provided unified scope in the British medical system for proxy consent with regard to medical decisions, in the form of a lasting power of attorney. While the intentions are to increase the autonomous decision making powers of those unable to consent, the author of this paper argues that the whole notion of proxy consent collapses into a paternalistic judgement regarding the other person’s best interests and that the new legislation introduces only an advisor, not (...) a proxy with the moral authority to make treatment decisions on behalf of another. The criticism is threefold. First, there is good empirical evidence that people are poor proxy decision makers as regards accurately representing other people’s desires and wishes, and this is therefore a pragmatically inadequate method of gaining consent. Second, philosophical theory explaining how we represent other people’s thought processes indicates that we are unlikely ever to achieve accurate simulations of others’ wishes in making a proxy decision. Third, even if we could accurately simulate other people’s beliefs and wishes, the current construction of proxy consent in the Mental Capacity Act means that it has no significant ethical authority to match that of autonomous decision making. Instead, it is governed by a professional, paternalistic, best-interests judgement that undermines the intended role of a proxy decision maker. The author argues in favour of clearly adopting the paternalistic best-interests option and viewing the proxy as solely an advisor to the professional medical team in helping make best-interests judgements. (shrink)

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through (...) public-private Initiatives: Public health, Market and Ethical perspectives’ identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research. We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment. (shrink)

There has been extensive discussion in research ethics literature surrounding the appropriate form of informed consent for biobanking, whether with adapted content, or adapted forms such as broad or tiered consent. These discussions presuppose that it is possible to disclose adequate information at the outset to facilitate an informed choice to donate to a biobank. I will argue that informed consent cannot be achieved because in the biobanking context, we are either consenting to an enterprise that is not research or (...) to future research. Nor is the solution to abandon the idea that informed consent ethically requires the disclosure of a certain minimal amount of information to make an informed choice by misleadingly identifying broad, blanket or even tiered consent as forms of ‘informed’ consent. Rather, we should abandon the idea that informed consent for research can be adapted to the type of endeavor that biobanking is, and understand the goal as to develop alternatives not as alternative forms of informed consent, but rather alternatives to informed consent. (shrink)