Many accounts of informed consent in medical ethics claim that it is valuable because it supports individual autonomy. Unfortunately there are many distinct conceptions of individual autonomy, and their ethical importance varies. A better reason for taking informed consent seriously is that it provides assurance that patients and others are neither deceived nor coerced. Present debates about the relative importance of generic and specific consent do not address this issue squarely. Consent is a propositional attitude, so intransitive: complete, wholly specific (...) consent is an illusion. Since the point of consent procedures is to limit deception and coercion, they should be designed to give patients and others control over the amount of information they receive and opportunity to rescind consent already given. (shrink)

This paper provides a new analysis of e - trust , trust occurring in digital contexts, among the artificial agents of a distributed artificial system. The analysis endorses a non-psychological approach and rests on a Kantian regulative ideal of a rational agent, able to choose the best option for itself, given a specific scenario and a goal to achieve. The paper first introduces e-trust describing its relevance for the contemporary society and then presents a new theoretical analysis of this phenomenon. (...) The analysis first focuses on an agent’s trustworthiness , this one is presented as the necessary requirement for e-trust to occur. Then, a new definition of e-trust as a second-order-property of first-order relations is presented. It is shown that the second-order-property of e-trust has the effect of minimising an agent’s effort and commitment in the achievement of a given goal. On this basis, a method is provided for the objective assessment of the levels of e-trust occurring among the artificial agents of a distributed artificial system. (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)

Why has autonomy been a leading idea in philosophical writing on bioethics, and why has trust been marginal? In this important book, Onora O'Neill suggests that the conceptions of individual autonomy so widely relied on in bioethics are philosophically and ethically inadequate, and that they undermine rather than support relations of trust. She shows how Kant's non-individualistic view of autonomy provides a stronger basis for an approach to medicine, science and biotechnology, and does not marginalize untrustworthiness, while also explaining why (...) trustworthy individuals and institutions are often undeservingly mistrusted. Her arguments are illustrated with issues raised by practices such as the use of genetic information by the police or insurers, research using human tissues, uses of new reproductive technologies, and media practices for reporting on medicine, science and technology. Autonomy and Trust in Bioethics will appeal to a wide range of readers in ethics, bioethics and related disciplines. (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)

The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole‐genome sequencing and micro‐array based analysis enable genome‐wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre‐test information and achieving autonomous decision‐making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so‐called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set‐up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set‐up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct‐to‐consumer applications of the new genetics. (shrink)

Farming is undergoing a digital revolution. Our existing review of current Big Data applications in the agri-food sector has revealed several collection and analytics tools that may have implications for relationships of power between players in the food system. For example, Who retains ownership of the data generated by applications like Monsanto Corproation's Weed I.D. “app”? Are there privacy implications with the data gathered by John Deere's precision agricultural equipment? Systematically tracing the digital revolution in agriculture, and charting the affordances (...) as well as the limitations of Big Data applied to food and agriculture, should be a broad research goal for Big Data scholarship. Such a goal brings data scholarship into conversation with food studies and it allows for a focus on the material consequences of big data in society. (shrink)

Biobank research is potentially fruitful. It is argued that broad consent is acceptable for future research on biological material because a) the benefit is high, b) it pays respect to people’s autonomy, c) it is consistent with current practices and d) because the risk is low. Furthermore, broad consent should be allowed if information is handled safely, people can withdraw and expanded research should be approved by an ethics review board. However, these arguments are flawed and the criteria for broad (...) consent are either too restrictive to allow any research or fail to address important challenges with biobank research. Broad consent for biobank research can hide substantial ethical challenges and threaten trust in research. This does not mean that biobank research should be abandoned or that people cannot authorise future research on donated biological material. (shrink)

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

Ethical guidelines commonly state that research subjects should have a right to withdraw consent to participate. According to the guidelines we have studied, this right applies also to research on biological samples. However, research conducted on human subjects themselves differs in important respects from research on biological samples. It is therefore not obvious that the same rights should be granted research participants in the two cases. This paper investigates arguments for and against granting a right to withdraw consent to research (...) on biobank samples. We conclude that (1) there are no explicit arguments for such a right in the guidelines we have studied, (2) the arguments against such a right are inconclusive, (3) considerations of autonomy, privacy, personal integrity, and trust in medical research provide sufficient reasons for granting a right to withdraw consent to research on biobank samples, (4) in certain cases, research participants should be allowed to waive this right. (shrink)

The use of tools and artefacts is a distinctive and problematic phenomenon in the history of humanity, and as such it has been a topic of discussion since the beginning of Western culture, from the myths of the Ancient Greek through Humanism and Romanticism to Heidegger. Several questionable aspects have been brought to the fore: the relation between technology and arts, the effects of the use of technology both on the world and on the user and the nature of the (...) trust that users place in technology . This last topic is the subject of this special issue, which has the twofold goal of fostering a cross-disciplinary debate and, in doing so, of overcoming, at least in part, the fragmentation of the literature on this topic.The problematic nature of trust in technology becomes evident with the dissemination of information and communication technologies and the subsequent information revolution, with which artefacts cease to be used mainly to perform physical and fatigui .. (shrink)

Smart farming has largely been driven by productivity and efficiency aims, but there is an increasing awareness of potential socio-ethical challenges. The responsible research and innovation approach aims to address such challenges but has had limited application in smart farming contexts. Using smart dairying research and development in New Zealand as a case study, we examine the extent to which principles of RRI have been applied in NZ smart dairying development and assess the broader lessons for RRI application in smart (...) farming. We draw on insights from: a review of research on dairy technology use in NZ; interviews with smart dairying stakeholders; and the application of an analytical framework based on RRI dimensions. We conclude that smart dairying R&D and innovation activities have focused on technology development and on-farm use without considering socio-ethical implications and have excluded certain actors such as citizens and consumers. This indicates that readiness to enact RRI in this context is not yet optimal, and future RRI efforts require leadership by government or dairy sector organisations to fully embed RRI principles in the guidelines for large R&D project design. More broadly, enacting RRI in smart farming requires initial identification of RRI readiness in a given sector or country and devising a roadmap and coherent project portfolio to support capacity building for enacting RRI. Additionally, methods for operationalising RRI must be adapted to the context of the national or sectoral innovation system in which smart farming is being developed. (shrink)

This paper presents a review of academic literature, policy documents from government organizations and international agencies, and reports from industries and popular media on the trends in Big Data utilization in key development issues and its worthwhileness, usefulness, and relevance. By looking at Big Data deployment in a number of key economic sectors, it seeks to provide a better understanding of the opportunities and challenges of using it for addressing key issues facing the developing world. It reviews the uses of (...) Big Data in agriculture and farming activities in developing countries to assess the capabilities required at various levels to benefit from Big Data. It also provides insights into how the current digital divide is associated with and facilitated by the pattern of Big Data diffusion and its effective use in key development areas. It also discusses the lessons that developing countries can learn from the utilization of Big Data in big corporations as well as in other activities in industrialized countries. (shrink)

Smart farming has largely been driven by productivity and efficiency aims, but there is an increasing awareness of potential socio-ethical challenges. The responsible research and innovation approach aims to address such challenges but has had limited application in smart farming contexts. Using smart dairying research and development in New Zealand as a case study, we examine the extent to which principles of RRI have been applied in NZ smart dairying development and assess the broader lessons for RRI application in smart (...) farming. We draw on insights from: a review of research on dairy technology use in NZ; interviews with smart dairying stakeholders; and the application of an analytical framework based on RRI dimensions. We conclude that smart dairying R&D and innovation activities have focused on technology development and on-farm use without considering socio-ethical implications and have excluded certain actors such as citizens and consumers. This indicates that readiness to enact RRI in this context is not yet optimal, and future RRI efforts require leadership by government or dairy sector organisations to fully embed RRI principles in the guidelines for large R&D project design. More broadly, enacting RRI in smart farming requires initial identification of RRI readiness in a given sector or country and devising a roadmap and coherent project portfolio to support capacity building for enacting RRI. Additionally, methods for operationalising RRI must be adapted to the context of the national or sectoral innovation system in which smart farming is being developed. (shrink)

The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole-genome sequencing and micro-array based analysis enable genome-wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre-test information and achieving autonomous decision-making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so-called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set-up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set-up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct-to-consumer applications of the new genetics. (shrink)