The principle of informed consent, codified in the Declaration of Helsinki, has been widely seen as fundamental to bio-medical and research ethics. The importance of informed consent is increasing in procedures regulating the acquisition, possession and use of personal information, including genetic and medical information. Informed consent, it is believed, ensures that patients and research subjects can decide autonomously whether to permit or refuse actions that affect them. In response to this assurance, there are numerous guidelines at local, national and (...) international levels that recognise the importance of informed consent, especially in research related to healthcare in developing countries. However, complications arise in applying these guidelines to a particular situation, especially under conditions that are prevalent in developing societies, for instance in India. This article discusses common forms of impediments or hindrances encountered while exercising the principles of informed consent in the context of genetic and genomics related research among the tribal and rural caste communities in India. These hindrances include: illiteracy, poverty, paternalistic attitudes, socio-cultural barriers, ineffective regulatory mechanism and procedural inconsistency among others. The data used in this article is based on an ethnographic study conducted between December 2006 and May 2007 using social-science qualitative research techniques. We observe that three areas require attention: first, the ways in which informed public debate on bioethical issues can be held, and how the application of genetics and genomics in Indian society can be discussed; second, the readiness with which researchers, IRB members and the state appreciate and wish to map the genetic diversity in Indian society; and, third, the risks associated with the application of bioethical principles at a micro-level. (shrink)

This paper discusses the ways in which the use of the notion of Asian bioethics since the 1990s has become a tool for building a platform of debate among East Asian countries. In many ways, the use of “Asian bioethics” is in an effort to counter what is perceived as Western bioethics and characterized by what are regarded as Western tendencies of individualism, rationalism, and modernization. I will argue, however, that, just as any notion of “Western bioethics,” the concept of (...) “Asian bioethics” offers little potential to solve issues of bioethical governance. First, although no doubt the notion of “bioethics” has been and is used hegemonically to push certain agendas, the view that bioethical issues in Asia and... (shrink)

ABSTRACT This article argues that taking concepts of euthanasia out of their political and economic contexts leads to violations of the premises on which the Stoic ideal of euthanasia is based: ‘a quick, gentle and honourable death’.2 For instance, the transplantation of the narrowly defined concept of euthanasia developed under the Dutch welfare system into a developing country, such as the People’s Republic of China (PRC), seems inadequate. For it cannot deal with questions of anxiety about degrading forms of dying (...) and suffering without reference to its economic rationale, demanded by a scarcity (unequal distribution) of health care resources. The weakness of health care provisions for the terminally ill in Mainland China has become increasingly poignant since the collapse of collective health care institutions in the countryside since the reforms of the late‐1980s. As in most cases where health care facilities are wanting, it is difficult to apply the criteria of gentleness and dignity at reaching death. Its solution lies not in a faster relief from suffering by euthanasia, but in extending the quality of life through distributive justice within Chinese healthcare policy‐making. This paper begins with a brief description of the Dutch euthanasia law, after which it discusses Chinese conceptions of euthanasia in biomedical textbooks, the media and in surveys. It concludes by pointing out the need for a transnational framework in which both the specifics and generalities of euthanasia can be discussed. (shrink)

Empirical studies of life science research and biotechnologies in Asia show how assemblages of life articulate bioethics governance with global moralities and reveal why the global harmonization of bioethical standards is contrived.

This volume investigates human genetic biobanking and its regulation in various Asian countries and areas, including Japan, Mainland China, Taiwan, Hong Kong, ...

In China, state investment into public hospitals has radically decreased since the early 1980s and has brought on the dismantling of the healthcare system in most parts of the country, especially in rural areas. As a result of this overhaul, the majority of public hospitals have needed to compete in the so-called socialist market economy. The market economy stimulated public hospitals to modernize, take on highly qualified medical professionals, and dispense new therapies and drugs. At same time, liberalization has clearly (...) affected the attitude and behavior of both medical professionals and the general public. The public has many concerns about the healthcare system for various reasons: there are long hospital waiting lists, patients experience difficulties in obtaining an appointment to see a qualified doctor, and, over the past decades, there has been an increase in out-of-pocket healthcare expenditure. These and other changes in post-reform China have radically reshaped the doctor–patient interaction, which is increasingly eroded by tension and violence. (shrink)

In China, under the heading of “private-for-public” banking, hybrid UCB banking has been politically supported by the government and is based on regulation developed since the 1990s. Although hybrid UCB banking was regarded as an “ethical” alternative to private UCB banking due to its accessibility to “the people”, this study, based on archival research and interviews with bankers, medical professionals, scientists and pregnant women contends that the practice of this ideal needs to be closely scrutinized. Analysing UCB bank networks in (...) China in terms of “public biovalue” and “ethical biocapital”, we illustrate, first, how the synergy of public and private storage of UCB in hybrid models benefit private storage, and how transparency and oversight may increase donation and the uptake of UCB. Second, we describe the problems associated with this hybrid model. Finally, we show how the biovalue of public storage is used as ethical biocapital to buttress UCB networks. (shrink)

This paper provides an empirical account of commercial genetic testing in China. Commercial predictive genetic testing has emerged and is developing rapidly in China, but there is no strict and effective governance. This raises a number of serious social and ethical issues as a consequence of the enormous potential market for such tests. The paper demonstrates that the commercialization of genetic testing and the lack of adequate regulation have created an environment in which dubious advertising practices and misleading and unprofessional (...) medical advice are commonplace. The consequences of these ethically problematic activities for the users of predictive tests are unknown. The paper concludes with a bioethical and social science perspective on the ethical governance issues raised by the dissemination and utilization of commercial genetic testing in Chinese society. (shrink)

In this essay, I indicate how social-science approaches can throw light on predictive genetic testing (PGT) in various societal contexts. In the first section, I discuss definitions of various forms of PGT, and point out their inherent ambiguity and inappropriateness when taken out of an ideal–typical context. In section two, I argue further that an ethics approach proceeding from the point of view of the abstract individual in a given society should be supplemented by an approach that regards bioethics as (...) inherently ambiguous, contested, changeable and context-dependent. In the last section, I place these bioethical discussions of PGT in the context of Asian communities. Here, a critical view of what constitutes a community and culture proves necessary to understand the role of bioethical debates and the empirical manifestations of PGT in Asian societies. A discussion of the concepts of family and kinship in relation to PGT indicates that any bioethical analysis has to take into account that bioethical values are not just reflections of a cultural community, but embody both bioethical ideals and prevalent political rhetoric which is exhibited, propagated and manipulated by individuals and collectives for a variety of purposes. I end by summarising the contributions that social science could make to the understanding of the bioethics of PGT. (shrink)

A central problem for the international governance of heritable germline gene editing is that there are important differences in attitudes and values as well as ethical and health care considerations around the world. These differences are reflected in a complicated and diverse regulatory landscape. Several publications have discussed whether reproductive uses would be legally permissible in individual countries and whether clinical applications could emerge in the context of regulatory gaps and gray areas. Systematic comparative studies that explore issues related to (...) the governance of this technology from different national and international perspectives are needed to address the lack of knowledge in this area. In this research report, we contribute to filling this gap by presenting views of stakeholders in the United Kingdom on challenges to the governance of heritable genome editing. We present findings from a multistakeholder study conducted in the United Kingdom between October 2016 and January 2018 and funded by the Wellcome Trust. This research included interviews, literature analysis, and a workshop. We involved leading U.K. scientists, in vitro fertilization clinicians, and representatives from regulatory bodies, patient organizations, and other civil societal organizations, as well as fertility companies. Part one of this article explores stakeholder perceptions of possible global developments in heritable genome editing and associated risks and governance challenges. Part two presents a range of policy options that were generated during the workshop in relation to the challenges discussed in part one. (shrink)

This paper provides an empirical account of commercial genetic predisposition testing in mainland China, based on interviews with company mangers, regulators and clients, and literature research during fieldwork in mainland China from July to September 2006. This research demonstrates that the commercialization of genetic testing and the lack of adequate regulation have created an environment in which dubious advertising practices and misleading and unprofessional medical advice are commonplace. The consequences of these ethically problematic activities for the users of predictive tests (...) are, as yet, unknown. The paper concludes with a bioethical and social science perspective on the social and ethical issues raised by the dissemination and utilization of genetic testing in mainland China. (shrink)

Margaret Sleeboom-Faulkner, ed. 2008. Human genetic biobanks in Asia: Politics of trust and scientific advancement Content Type Journal Article DOI 10.1007/s11673-010-9234-6 Authors Darryl Macer, UNESCO Bangkok Regional Adviser in Social and Human Sciences for Asia and the Pacific, Regional Unit for Social and Human Sciences in Asia and the Pacific (RUSHSAP) 920 Sukhumvit Road, Prakanong Bangkok 10110 Thailand Journal Journal of Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529 Journal Volume Volume 7 Journal Issue Volume 7, Number (...) 2. (shrink)

An essential work for anyone interested in the creativity of the human mind, "The Creative Mind" has been updated to include recent developments in artificial ...

The central problem of social theory is 'structure and agency'. How do the objective features of society influence human agents? Determinism is not the answer, nor is conditioning as currently conceptualised. It accentuates the way structure and culture shape the social context in which individuals operate, but it neglects our personal capacity to define what we care about most and to establish a modus vivendi expressive of our concerns. Through inner dialogue, 'the internal conversation', individuals reflect upon their social situation (...) in the light of current concerns and projects. On the basis of a series of unique, in-depth interviews, Archer identifies three distinctive forms of internal conversation. These govern agents' responses to social conditioning, their individual patterns of social mobility and whether or not they contribute to social stability or change. Thus the internal conversation is seen as being the missing link between society and the individual, structure and agency. (shrink)

Providing the most thorough coverage available in one volume, this comprehensive, broadly based collection offers a wide variety of selections in four major genres, and also includes a section on film. Each of the five sections contains a detailed critical introduction to each form, brief biographies of the authors, and a clear, concise editorial apparatus. Updated and revised throughout, the new Fourth Edition adds essays by Margaret Mead, Russell Baker, Joan Didion, Annie Dillard, and Alice Walker; fiction by Nathaniel (...) Hawthorne, Ursula K. LeGuin, Anton Chekov, James Joyce, Katherine Mansfield, F. Scott Fitzgerald, William Faulkner, Alice Walker, Louise Erdrich, Donald Barthelme, and James McPherson; poems by John Donne, Robert Browning, Walt Whitman, Edwin Arlington Robinson, e.e. cummings, Langston Hughes, W.H. Auden, Philip Levine, and Louise Gluck; and plays by August Wilson, Marsha Norman, Wendy Wasserstein, and Vaclav Havel. The chapter devoted to film examines the relation of film to literature and gives the complete screenplay for Citizen Kane plus close analysis of a scene from the film. With its innovative structure, comprehensive coverage, and insightful and stimulating presentation of all kinds of literature, this is an anthology readers will turn to again and again. (shrink)

Since the publication of Roy Bhaskar's A Realist Theory of Science in 1975, critical realism has emerged as one of the most powerful new directions in the philosophy of science and social science, offering a real alternative to both positivism and postmodernism. This reader makes accessible in one volume key readings to stimulate debate about and within critical realism, including: the transcendental realist philosophy of science elaborated in A Realist Theory of Science ; Bhaskar's critical naturalist philosophy of social science; (...) the theory of explanatory critique, which is central to critical realism; and the theme of dialectic, which is central to Bhaskar's most recent writings. The volume includes extracts from Bhaskar's most important books, as well as selections from all of the other most important contributors to the critical realist program. It also includes both a general introduction and original introductions to each section. (shrink)

Atheism as a belief does not have to present intellectual credentials within academia. Yet to hold beliefs means giving reasons for doing so, ones which may be found wanting. Instead, atheism is the automatic default setting within the academic world. Conversely, religious belief confronts a double standard. Religious believers are not permitted to make truth claims but are instead forced to present their beliefs as part of one language game amongst many. Religious truth claims are expected to satisfy empiricist criteria (...) of evidence but when they fail, as they must, religious belief becomes subject to the hermeneutics of suspicion. This book explores religious experience as a justifiable reason for religious belief. It uniquely demonstrates that the three pillars of critical realism --ontological intransitivity, epistemic relativity and judgemental rationality -- can be applied to religion as to any other beliefs or theories. The three authors are critical realists by philosophical position. They seek to establish a level playing field between religion and secular ideas, which has not existed in the academic world for some generations, in order for reasoned debate to be conducted. (shrink)

In a compelling chronicle of her search to understand Beauvoir's philosophy in The Second Sex, Margaret A. Simons offers a unique perspective on Beauvoir's wide-ranging contribution to twentieth-century thought. She details the discovery of the origins of Beauvoir's existential philosophy in her handwritten diary from 1927; uncovers evidence of the sexist exclusion of Beauvoir from the philosophical canon; reveals evidence that the African-American writer Richard Wright provided Beauvoir with the theoretical model of oppression that she used in The Second (...) Sex; shows the influence of The Second Sex in transforming Sartre's philosophy and in laying the theoretical foundations of radical feminism; and addresses feminist issues of racism, motherhood, and lesbian identity. Simons also draws on her experience as a Women's Liberation organizer as she witnessed how women used The Second Sex in defining the foundations of radical feminism. Bringing together her work as both activist and scholar, Simons offers a highly original contribution to the renaissance of Beauvoir scholarship. (shrink)

At least some of these commentators have then, rather naturally, taken a step which it will be the business of this essay to criticize. They have suggested that Leibniz’s "counter-part theory" can be understood as providing an interpretation of counter-factuals and certain forms of modal discourse within his system. For example, Mondadori writes.

Moral virtue is, for Aristotle, a state to which an agent’s motivation is central. For anyone interested in Aristotle’s account of moral development this invites reflection on two questions: how is it that virtuous motivational dispositions are established? And what contribution do the moral learner’s existing motivational states make to the success of her habituation? I argue that views which demand that the learner act with virtuous motives if she is to acquire virtuous dispositions misconstrue the nature and structure of (...) the habituation process, but also obscure Aristotle’s crucial insight that the very practice of virtuous actions affords a certain discovery and can be transformative of an agent’s motivational states. Drawing attention, in Aristotle’s account, to an asymmetry between the agential perspective and the observation of others, I consider what the agential perspective affords the learner, and offer a novel interpretation of the role a learner’s existing motives play in her habituation. (shrink)

An invaluable complement to the standards works in early modern philosophy, this anthology introduces an important selection from the largely unknown writings of women philosophers of the early modern period. Readings comment on major works of the period and are easily integrated into courses in the history of modern philosophy. Included are letters to prominent philosophers, philosophical tracts arguing a particular view, and comments on controversies of the day. Each section is prefaced by a headnote giving a biographical account of (...) its author and setting the piece in historical context. Atherton's introduction provides a solid framework for assessing these works and their place in modern philosophy. -- from back cover. (shrink)

The Ethics of Nationalism blends philosophical discussion of the ethical merits and limits of nationalism with a detailed understanding of nationalist aspirations and a variety of national conflict zones. The author discusses the controversial and contemporary issues of rights of secession, the policies of the state in privileging a particular national group, the kinds of accommodations of minority national, and multi cultural identity groups that are justifiable and appropriate.

This paper challenges the common assumption that an agreement is an exchange of promises. Proposing that the performance obligations of some typical agreements are simultaneous, interdependent, and unconditional, it argues that no promise-exchange has this structure of obligations. In addition to offering general considerations in support of this claim, it examines various types of promise-exchange, showing that none satisfy the criteria noted. Two forms of conditional promise are distinguished and both forms are discussed. A positive account of agreements as joint (...) decisions founded in a joint commitment is sketched. It is argued that the example agreements represent especially clearly the normative structure of social union. (shrink)

" Reflexivity" is defined as the regular exercise of the mental ability, shared by all normal people, to consider themselves in relation to their contexts and vice versa. In addition to this sociological interest, it allows us to hold idle or trivial internal conversations. Focussing fully on this phenomenon, this book discusses the three main questions associated with this subject in detail. Where does the ability to be "reflexive" comes from? What part do our internal reflexive deliberations play in designing (...) the courses of action we take: subordinate to habitual action or not? Is "reflexivity" a homogeneous practice for all people and invariant over history? In addressing these questions, contributors engage critically with the most relevant studies by luminaries such as G.H Mead, C.S. Pierce, Habermas, Luhmann, Beck, Giddens and Bourdieu. Most contributors are leading Pragmatists or Critical Realists, associated with the "Reflexivity Forum" an informal, international and inter-disciplinary group. This combination of reference to influential writers of the past, and the best of modern theory has produced a fascinating book that is essential reading for all students with a serious interest in social theory or critical realism. (shrink)

: Many have asked how and why feminist theory makes a distinctive contribution to bioethics. In this essay, I outline two ways in which feminist reflection can enrich bioethical studies. First, feminist theory may expose certain themes of androcentric reasoning that can affect, in sometimes crude but often subtle ways, the substantive analysis of topics in bioethics; second, it can unearth the gendered nature of certain basic philosophical concepts that form the working tools of ethical theory.

In Culture and Agency, I distinguished between the ‘Cultural System', namely all items logged into the universal cultural archive, and ‘Socio-Cultural' interaction, na...

The alienation of body parts and their transformation into commodities raises questions about ownership, property rights, and about possible violation of the moral order. This article focuses on the `social life' of objects, including body parts, and the multiple meanings attached to them that are made visible in systems of exchange. The transformation of DNA obtained in blood samples into immortalized cell lines for use in the Human Genome Diversity Project is introduced as an illustration of contested commodification. The meanings (...) attached to the blood samples by those from whom they are procured and their worth to the scientists who create the cell lines are of an entirely different order. Disputes about the HGDP that have erupted since it was first planned are presented in detail, followed by a discussion of the ethics of gene prospecting and the associated politics of biocapitalism currently proliferating in the private sector. (shrink)

Many have asked how and why feminist theory makes a distinctive contribution to bioethics. In this essay, I outline two ways in which feminist reflection can enrich bioethical studies. First, feminist theory may expose certain themes of androcentric reasoning that can affect, in sometimes crude but often subtle ways, the substantive analysis of topics in bioethics; second, it can unearth the gendered nature of certain basic philosophical concepts that form the working tools of ethical theory.

This book, the last volume in the Social Morphogenesis series, examines whether or not a Morphogenic society can foster new modes of human relations that could exercise a form of 'relational steering', protecting and promoting a nuanced version of the good life for all. It analyses the way in which the intensification of morphogenesis and the diminishing of morphostasis impact upon human flourishing. The book links intensified morphogenesis to promoting human flourishing based on the assumption that new opportunities open up (...) novel experiences, skills, and modes of communication that appeal to talents previously lacking any outlet or recognition. It proposes that equality of opportunity would increase as ascribed characteristics diminished in importance, and it could be maintained as the notion of achievement continued to diversify. Digitalization has opened the cultural 'archive' for more to explore and, as it expands exponentially, so do new complementary compatibilities whose development foster yet further opportunities. If more people can do more of what they do best, these represent stepping stones towards the 'good life' for more of them. (shrink)