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)

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)

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)

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)

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)

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, ...

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)

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)