The goal of the book is to present the latest research on the new challenges of data technologies. It will offer an overview of the social, ethical and legal problems posed by group profiling, big data and predictive analysis and of the different approaches and methods that can be used to address them. In doing so, it will help the reader to gain a better grasp of the ethical and legal conundrums posed by group profiling. The volume first maps the (...) current and emerging uses of new data technologies and clarifies the promises and dangers of group profiling in real life situations. It then balances this with an analysis of how far the current legal paradigm grants group rights to privacy and data protection, and discusses possible routes to addressing these problems. Finally, an afterword gathers the conclusions reached by the different authors and discuss future perspectives on regulating new data technologies. (shrink)

Big data biology—bioinformatics, computational biology, systems biology (including ‘omics’), and synthetic biology—raises a number of issues for the philosophy of science. This article deals with several such: Is data-intensive biology a new kind of science, presumably post-reductionistic? To what extent is big data biology data-driven? Can data ‘speak for themselves?’ I discuss these issues by way of a reflection on Carl Woese’s worry that “a society that permits biology to become an engineering discipline, that allows that science to slip into (...) the role of changing the living world without trying to understand it, is a danger to itself.” And I argue that scientific perspectivism, a philosophical stance represented prominently by Giere, Van Fraassen, and Wimsatt, according to which science cannot as a matter of principle transcend our human perspective, provides the best resources currently at our disposal to tackle many of the philosophical issues implied in the modeling of complex, multilevel/multiscale phenomena. (shrink)

What is the impact of information and communication technologies (ICTs) on the human condition? In order to address this question, in 2012 the European Commission organized a research project entitled The Onlife Initiative: concept reengineering for rethinking societal concerns in the digital transition. This volume collects the work of the Onlife Initiative. It explores how the development and widespread use of ICTs have a radical impact on the human condition.

In a Different Voice is the little book that started a revolution, making women's voices heard, in their own right and with their own integrity, for virtually the first time in social scientific theorizing about women. Its impact was immediate and continues to this day, in the academic world and beyond.

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, (...) Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing. (shrink)

Most moral philosophers who have recently expressed sympathy with feminist or ‘care-based’ perspectives on ethical theory have thought that such perspectives can make valuable contributions to more comprehensive ethical theories. Few have thought that an ethics of care can offer a complete normative theory. However, Michael Slote is one of the ambitious few. In his recent book, The Ethics of Care and Empathy, he seeks to show that a care-based perspective can do a lot of service in first-order moral and (...) political theory as well as in metaethics. Here is a quick overview of the book's content: In Chapter 1, Slote explicates the notion of empathy that is central in his ethics of care, which he locates within the sentimentalist paradigm, stemming from philosophers such as Hume and Hutcheson. Slote's account of empathy and moral development draws substantially on work by the psychologist Martin Hoffman. Chapter 2 discusses care ethics and our obligation to help others, including both the near and the distant needy. Chapter 3 aims to show how the notion of empathy can further the case for deontology in ethics. Chapters 4 through 6 discuss the relation of care ethics to pivotal issues in political philosophy, such as autonomy, liberalism, social justice and rights. Slote maintains that autonomy …. (shrink)

Background Continued advances in human microbiome research and technologies raise a number of ethical, legal, and social challenges. These challenges are associated not only with the conduct of the research, but also with broader implications, such as the production and distribution of commercial products promising maintenance or restoration of good physical health and disease prevention. In this article, we document several ethical, legal, and social challenges associated with the commercialization of human microbiome research, focusing particularly on how this research is (...) mobilized within economic markets for new public health uses. Methods We conducted in-depth, semi-structured interviews (2009–2010) with 63 scientists, researchers, and National Institutes of Health project leaders (“investigators”) involved with human microbiome research. Interviews explored a range of ethical, legal, and social dimensions of human microbiome research, including investigators’ perspectives on commercialization. Using thematic content analysis, we identified and analyzed emergent themes and patterns. Results Investigators discussed the commercialization of human microbiome research in terms of (1) commercialization, probiotics, and issues of safety, (2) public awareness of the benefits and risks of dietary supplements, and (3) regulation. Conclusion The prevailing theme of ethical, legal, social concern focused on the need to find a balance between the marketplace, scientific research, and the public’s health. The themes we identified are intended to serve as points for discussions about the relationship between scientific research and the manufacture and distribution of over-the-counter dietary supplements in the United States. (shrink)

(2013). An Unbiased Response to the Open Peer Commentaries on “Does Consent Bias Research?”. The American Journal of Bioethics: Vol. 13, No. 4, pp. W1-W4. doi: 10.1080/15265161.2013.769824.

Empirical research into the ethics of emerging technologies, often involving foresight studies, technology assessment or application of the precautionary principle, raises significant epistemological challenges by failing to explain the relative epistemic status of contentious normative claims about future states. This weakness means that it is unclear why the conclusions reached by these approaches should be considered valid, for example in anticipatory ethical assessment or governance of emerging technologies. This paper explains and responds to this problem by proposing an account of (...) how the epistemic status of uncertain normative claims can be established in ethical and political discourses based on Jürgen Habermas’ discourse ethics. To better understand the nature of the problem, the relationship between norms, facts and the future is explored in light of potential meta-ethical fallacies faced in the field of empirical ethics. Weaknesses of current approaches to anticipatory ethical assessment and governance are then explored, including the Precautionary Principle and Technology Assessment. We argue that the epistemic status of uncertain normative claims can be understood within Habermas’ approach to political discourse, which requires ‘translation’ of uncertain claims to be comprehensible to other stakeholders in discourse. Translation thus provides a way to allow for uncertain normative claims to be considered alongside other types of validity claims in discourse. The paper contributes a conceptual account of the epistemic status of uncertain normative claims in discourse and begins to develop a ‘methodology of translation’ which can be further developed for approaches to research and ethical assessment supporting anticipatory evidence-based policy, governance and system design. (shrink)

Few things seem more a part of the material world than biological specimens. Yet the processes by which collections of specimens are assembled, translated into information, combined with more information, and distributed are taking research repositories into the virtual realm.The term “virtual” has a number of meanings, and so a research repository can qualify as virtual in a variety of ways. The term would seem to apply, for example, to constructing a repository by forming a network among institutions; using the (...) Internet or the World Wide Web to solicit specimens and information; integrating web-based technology into the operation of the bank; using the Internet or web-based technology to manage relationships with donors or collection sites and recipients; and digitizing specimens. The all-digital repository would seem the most virtual of all possible repositories, a true cyberbank. (shrink)

Few things seem more a part of the material world than biological specimens. Yet the processes by which collections of specimens are assembled, translated into information, combined with more information, and distributed are taking research repositories into the virtual realm.The term “virtual” has a number of meanings, and so a research repository can qualify as virtual in a variety of ways. The term would seem to apply, for example, to constructing a repository by forming a network among institutions; using the (...) Internet or the World Wide Web to solicit specimens and information; integrating web-based technology into the operation of the bank; using the Internet or web-based technology to manage relationships with donors or collection sites and recipients; and digitizing specimens. The all-digital repository would seem the most virtual of all possible repositories, a true cyberbank. (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)

(2013). Informed Consent, Big Data, and the Oxymoron of Research That Is Not Research. The American Journal of Bioethics: Vol. 13, No. 4, pp. 40-42. doi: 10.1080/15265161.2013.768864.

The accelerating adoption of electronic health record systems will have far-reaching implications for public health research and surveillance, which in turn could lead to changes in public policy, statutes, and regulations. The public health benefits of EHR use can be significant. However, researchers and analysts who rely on EHR data must proceed with caution and understand the potential limitations of EHRs. Because of clinicians' workloads, poor user-interface design, and other factors, EHR data can be erroneous, miscoded, fragmented, and incomplete. In (...) addition, public health findings can be tainted by the problems of selection bias, confounding bias, and measurement bias. These flaws may become all the more troubling and important in an era of electronic “big data,” in which a massive amount of information is processed automatically, without human checks. Thus, we conclude the paper by outlining several regulatory and other interventions to address data analysis difficulties that could result in invalid conclusions and unsound public health policies. (shrink)

The accelerating adoption of electronic health record systems will have profound impacts on clinical care. It will also have far-reaching implications for public health research and surveillance, which in turn could lead to changes in public policy, statutes, and regulations. The public health benefits of EHR use can be significant. However, researchers and analysts who rely on EHR data must proceed with caution and understand the potential limitations of EHRs.Much has been written about the risk of EHR privacy breaches. This (...) paper focuses on a different set of concerns, those relating to data quality. Unlike clinical trial data, EHR data is not recorded primarily to meet the needs of researchers. Because of clinicians’ workloads, poor user-interface design, and other factors, EHR data is surprisingly likely to be erroneous, miscoded, fragmented, and incomplete. Although EHRs eliminate the problem of cryptic handwriting, other kinds of errors are more common with EHRs than with paper records. (shrink)

A major contribution to contemporary social theory. Not only does it provide a compelling critique of some of the main perspectives in 20th century philosophy and social science, but it also presents a systematic synthesis of the many themse which have preoccupied Habermas for thirty years. --Times Literary Supplement.

Luciano Floridi presents a book that will set the agenda for the philosophy of information. PI is the philosophical field concerned with the critical investigation of the conceptual nature and basic principles of information, including its dynamics, utilisation, and sciences, and the elaboration and application of information-theoretic and computational methodologies to philosophical problems. This book lays down, for the first time, the conceptual foundations for this new area of research. It does so systematically, by pursuing three goals. Its metatheoretical goal (...) is to describe what the philosophy of information is, its problems, approaches, and methods. Its introductory goal is to help the reader to gain a better grasp of the complex and multifarious nature of the various concepts and phenomena related to information. Its analytic goal is to answer several key theoretical questions of great philosophical interest, arising from the investigation of semantic information. (shrink)

The use of “levels of abstraction” in philosophical analysis (levelism) has recently come under attack. In this paper, I argue that a refined version of epistemological levelism should be retained as a fundamental method, called the method of levels of abstraction. After a brief introduction, in section “Some Definitions and Preliminary Examples” the nature and applicability of the epistemological method of levels of abstraction is clarified. In section “A Classic Application of the Method ofion”, the philosophical fruitfulness of the new (...) method is shown by using Kant’s classic discussion of the “antinomies of pure reason” as an example. In section “The Philosophy of the Method of Abstraction”, the method is further specified and supported by distinguishing it from three other forms of “levelism”: (i) levels of organisation; (ii) levels of explanation and (iii) conceptual schemes. In that context, the problems of relativism and antirealism are also briefly addressed. The conclusion discusses some of the work that lies ahead, two potential limitations of the method and some results that have already been obtained by applying the method to some long-standing philosophical problems. (shrink)

Between 2006 and 2011, humanity accumulated 1,600 EB of data. As a result of this growth, there is now more data produced than available storage. This article explores the problem of “Big Data,” arguing for an epistemological approach as a possible solution to this ever-increasing challenge.

As big data techniques become widespread in journalism, both as the subject of reporting and as newsgathering tools, the ethics of data science must inform and be informed by media ethics. This article explores emerging problems in ethical research using big data techniques. It does so using the duty-based framework advanced by W.D. Ross, who has significantly influenced both research science and media ethics. A successful framework must provide stability and flexibility. Without stability, ethical precommitments will vanish as technology rapidly (...) shifts costs. Without flexibility, traditional approaches will rapidly become obsolete in the face of technological change. The article concludes that Ross's duty-based approach both provides stability in the face of rapid technological change and flexibility to innovate to achieve the original purpose of basic ethical principles. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

Via a historical reconstruction, this paper primarily demonstrates how the societal debate on genetically modified organisms (GMOs) gradually extended in terms of actors involved and concerns reflected. It is argued that the implementation of recombinant DNA technology out of the laboratory and into civil society entailed a “complex of concerns.” In this complex, distinctions between environmental, agricultural, socio-economic, and ethical issues proved to be blurred. This fueled the confusion between the wider debate on genetic modification and the risk assessment of (...) transgenic crops in the European Union. In this paper, the lasting skeptical and/or ambivalent attitude of Europeans towards agro-food biotechnology is interpreted as signaling an ongoing social request – and even a quest – for an evaluation of biotechnology with Sense and Sensibility. In this (re)quest, a broader-than-scientific dimension is sought for that allows addressing the GMO debate in a more “sensible” way, whilst making “sense” of the different stances taken in it. Here, the restyling of the European regulatory frame on transgenic agro-food products and of science communication models are discussed and taken to be indicative of the (re)quest to move from a merely scientific evaluation and risk-based policy towards a socially more robust evaluation that takes the “non-scientific” concerns at stake in the GMO debate seriously. (shrink)

Via a historical reconstruction, this paper primarily demonstrates how the societal debate on genetically modified organisms (GMOs) gradually extended in terms of actors involved and concerns reflected. It is argued that the implementation of recombinant DNA technology out of the laboratory and into civil society entailed a “complex of concerns.” In this complex, distinctions between environmental, agricultural, socio-economic, and ethical issues proved to be blurred. This fueled the confusion between the wider debate on genetic modification and the risk assessment of (...) transgenic crops in the European Union. In this paper, the lasting skeptical and/or ambivalent attitude of Europeans towards agro-food biotechnology is interpreted as signaling an ongoing social request – and even a quest – for an evaluation of biotechnology with Sense and Sensibility. In this (re)quest, a broader-than-scientific dimension is sought for that allows addressing the GMO debate in a more “sensible” way, whilst making “sense” of the different stances taken in it. Here, the restyling of the European regulatory frame on transgenic agro-food products and of science communication models are discussed and taken to be indicative of the (re)quest to move from a merely scientific evaluation and risk-based policy towards a socially more robust evaluation that takes the “non-scientific” concerns at stake in the GMO debate seriously. (shrink)

Biomedical research has always relied on access to human biological materials and clinical information, resources that when combined form biobanks. In the past, it appears that investigators sometimes used these resources with relatively little oversight, and without the consent of the individuals from whom these materials and information were obtained. Several developments in the last ten to fifteen years have converged to place greater emphasis on the role of individual consent in the creation and use of biobanks. The most important (...) by far is the power of information technology, which has transformed our lives in almost every domain. In the research setting, it is now easy to abstract information from electronic medical records. Computers make it possible to analyze enormous datasets and have contributed in essential ways to the dramatic increases in our understanding of genomics and other areas of biomedical science. (shrink)

Biomedical research has always relied on access to human biological materials and clinical information, resources that when combined form biobanks. In the past, it appears that investigators sometimes used these resources with relatively little oversight, and without the consent of the individuals from whom these materials and information were obtained. Several developments in the last ten to fifteen years have converged to place greater emphasis on the role of individual consent in the creation and use of biobanks. The most important (...) by far is the power of information technology, which has transformed our lives in almost every domain. In the research setting, it is now easy to abstract information from electronic medical records. Computers make it possible to analyze enormous datasets and have contributed in essential ways to the dramatic increases in our understanding of genomics and other areas of biomedical science. (shrink)

With numerous examples to supplement her rich theoretical discussion, Nel Noddings builds a compelling philosophical argument for an ethics based on natural caring, as in the care of a mother for her child. In _Caring_—now updated with a new preface and afterword reflecting on the ongoing relevance of the subject matter—the author provides a wide-ranging consideration of whether organizations, which operate at a remove from the caring relationship, can truly be called ethical. She discusses the extent to which we may (...) truly care for plants, animals, or ideas. Finally, she proposes a realignment of education to encourage and reward not just rationality and trained intelligence, but also enhanced sensitivity in moral matters. (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)

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)

Written in the 1960s, TRUTH AND METHOD is Gadamer's magnum opus. Looking behind the self-consciousness of science, he discusses the tense relationship between truth and methodology. In examining the different experiences of truth, he aims to "present the hermeneutic phenomenon in its fullest extent.

Theory of Communicative Action, Volume 2 is a Beacon Press publication.

Big data, big impact -- Values and actions -- Current practices -- Aligning values and actions.

Eminent moral philosopher Michael Slote argues that care ethics presents an important challenge to other ethical traditions and that a philosophically developed care ethics should, and can, offer its own comprehensive view of the whole of morality. Taking inspiration from British moral sentimentalism and drawing on recent psychological literature on empathy, he shows that the use of that notion allows care ethics to develop its own sentimentalist account of respect, autonomy, social justice, and deontology. Furthermore, he argues that care ethics (...) gives a more persuasive account of these topics than theories offered by contemporary Kantian liberalism. The most philosophically rich and challenging exploration of the theory and practice of care to date, _The Ethics of Care and Empathy_ also shows the manifold connections that can be drawn between philosophical issues and leading ideas in the fields of psychology, education, and women's studies. (shrink)

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these are discussed. The system (...) / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient’s identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations. (shrink)

The current prevailing view is that participation in biomedical research is above and beyond the call of duty. While some commentators have offered reasons against this, we propose a novel public goods argument for an obligation to participate in biomedical research. Biomedical knowledge is a public good, available to any individual even if that individual does not contribute to it. Participation in research is a critical way to support an important public good. Consequently, all have a duty to participate. The (...) current social norm is that individuals participate only if they have a good reason to do so. The public goods argument implies that individuals should participate unless they have a good reason not to. Such a shift would be of great aid to the progress of biomedical research, eventually making society significantly healthier and longer lived. (shrink)