Margaret Sleeboom-Faulkner

University of Sussex · Department of Anthropology

Brosnan et al. (Eds.) (Complementary and alternative medicine. Exploring health and technology through personal medical devices. Basingstoke: Palgrave Macmillan, 2018) challenge the assumption that complementary and alternative medicine is outside of conventional biomedical orthodoxy to show how it has been incorporated into biomedical and its know...

What should be a firm commitment to product efficacy is threatened by economic competition

This article concerns the roles of entrepreneurial scientists in the co-production of life science research and regulation. Regulatory brokerage, defined as a mode of strategic planning and as the negotiation of regulation based on comparative advantage and competition, is expressed in scientific activities that take advantage of regulatory differe...

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 repro...

New protocols for scientific integrity and data management issued by universities, journals, and transnational social science funding agencies are often modelled on medical or psychological research, and do not take account of the specific characteristics of the processes of ethnographic research. These guidelines provide ethnographers with some of...

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 res...

Recent demands for accountability in 'data management' by funding agencies, universities, international journals and other academic institutions have worried many anthropologists and ethnographers. While their demands for transparency and integrity in opening up data for scrutiny seem to enhance scientific integrity, such principles do not always c...

While other works have explained difficulties in applying 'international' guidelines in the field of regenerative medicine in so-called low- and middle-income countries (LMICs) in terms of 'international hegemony', 'political and ethical governance' and 'cosmopolitisation', this article on stem cell regulation in China emphasizes the particular com...

In this article on innovative medical treatment for serious conditions in Japan, we aim to revise two widespread notions: first, that people living with severe conditions are all waiting for a cure or are impatient to try out experimental treatment, in particular regenerative medicine. Showing that motivations for cure seeking are complex and linke...

While other works have explained difficulties in applying ‘international’ guidelines in the field of regenerative medicine in so-called low- and middle-income countries (LMICs) in terms of ‘international hegemony’, ‘political and ethical governance’ and ‘cosmopolitisation’, this article on stem cell regulation in China emphasizes the particular com...

Genetic epidemiology examines the role of genetic factors in determining health and disease in families and in populations to help addressing health problems in a responsible manner. This paper uses a case study of genetic epidemiology in Taizhou, China, to explore ways in which anthropology can contribute to the validation of studies in genetic ep...

Based on a case study of a clinical stem cell intervention (CSCI) center in Chennai, India, this article explores distinct entrepreneurial strategies for the promotion of unrecognized clinical stem cell applications in India. It shows that the center-an Indo-Japanese joint-venture-is able to promote the CSCI due to its central position in a network...

This chapter reviews the regulatory situation for clinical stem cell research in the People’s Republic of China since the early 2000s. The paper is structured in four parts. Part I examines the regulatory conditions for the donation of human gametes and embryos and their use in basic and preclinical research. This involves an overview of China’s re...

Commercial promotion of unsupported therapeutic uses of stem cells is a global problem that has proven resistant to regulatory efforts. Here, we suggest a coordinated approach at the national and international levels focused on engagement, harmonization, and enforcement to reduce the risks associated with direct-to-consumer marketing of unproven st...

In the United States, the “common law,” that regulates ethics review is being overhauled. We ask how UK University Research Ethics Committees (U-RECs), following the American model, have been able to shape social-science research without much commotion, and whether it is time for change.Despite the misbehavior of some ethnographic researchers, most...

No abstract is available for this article.

In this article, we explore regulatory developments in stem cell medicine in seven jurisdictions: Japan, China, India, Argentina, Brazil, the USA and the EU. We will show that the research methods, ethical standards and approval procedures for the market use of clinical stem cell interventions are undergoing an important process of global diversifi...

This article examines the use of the notions of "Asian" and "East Asian" in definitions of bioethics. Using examples from East Asia, I argue that the verbal Asianization of bioethics is based on the notion of "Asia" as a family metaphor and serves as a platform of bioethical debate, networking, and political change. I maintain that the use of "Asia...

To address critique of the rare uptake of umbilical cord blood (UCB) in private banks, hybrid-banking models would combine the advantages of “public UCB banking” and private UCB banking by responding to both market forces and public needs. We question both by following the cycle of UCB banking in India: the circulation and stagnation of UCB as wast...

This article aims to put into perspective the binary opposition between ‘scientific’ clinical research trials and ‘rogue’ experimental stem cell therapies, and to show why the ethics criteria used by the dominant science community are not suitable for distinguishing between adequate and inadequate treatments. By focusing on the grey area between cl...

A very large grey area exists between translational stem cell research and applications that comply with the ideals of randomised control trials and good laboratory and clinical practice and what is often referred to as snake-oil trade. We identify a discrepancy between international research and ethics regulation and the ways in which regulatory i...

On 22 August 2015 the Chinese National Health and Family Planning Commission (NHFPC; the former Ministry of Health, MOH) have issued the long awaited ‘draft’ regulation on clinical research and applica- tions that involve human stem cells [1–3]. In China, regulation usually starts out as a draft or trial regulation. A draft regula- tion should be r...

As in other areas of science, the conditions under which stem cell research develops are crucial to the development of its knowledge products. Material and intellectual resources, governance, and culture are factors that underlie the realization of science. The concept of bionetworking aims to capture these factors, and we use it to describe the ev...

This review article discusses the 'translation of Asian modes of healing and medicine' in six recently published books by raising seven questions. They serve both to review the volumes, and to ask how we have moved from understanding systems of healing in terms of tradition and modernity, science and non-science, globalization and locality, innovat...

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...

This article examines contemporary notions of the gift, such as organ donation, art subsidy, religious blessing, volunteering, bribery, and relates them to particular interpretations of the Maussian gift. Following classical debate, current discussions tend to polarise the meaning of gifts and commodities. I argue, however, that gift and commodity...

In South Korea, bottom-up campaigns played a significant role in legislating the Bioethics and Biosafety Act. Formed of alliances between civic activists, NGOs, religious groups, and some individual experts, they shared the goal of bioethical legislation and also demanded the democratic control of new biotechnologies. However, the Hwang Woo-suk sca...

In the film, Please Vote for Me (2007), director Weijun Chen illustrates how leadership ambitions allowed ‘undemocratic’ means of competition during a democratic election among primary school children. Parents encouraged and teachers allowed unscrupulous competition among preselected eight-year-old candidates. The competition led to classmates bein...

Bioethical ideas, guidelines and institutions are seen as the result of values negotiated in a global moral economy meant to facilitate scientific development and biomedical innovation; the belief in this arrangement forms an important rationale for investment in the life sciences. The life assemblages studied in this book, however, show that a ‘sh...

This chapter is concerned with the ways in which genetic knowledge in various Asian societies is part of varying life assemblages, conditioned by specific constellations of power. In Chapter 2 we saw how in life assemblages in China, India and Japan, apart from state-level pressures, community- and family-based interferences may be of great influen...

The nature of the relation between medical research and society is changing in fundamental ways. The focus of medical research has moved away from the study of individual bodies as physical entities to medical studies based on networks of data, information and archival systems, such as biobanks. A shift is taking place, then, from the hospital as t...

Although population health in most countries is a general political concern, population policies that emphasise economic growth pay particular attention to the population’s condition to sustain the economy. From this perspective, technology serves to raise the physical and mental health of the population and optimise reproductive success. Much cont...

Human embryonic stem cell research (hESR) has been controversial in many societies owing partly to the existence of diverging views on the normative value of the embryo, and on the ethical derivation and use of embryos and oocytes required for research. This kind of controversy has been, and still is, expressed in the form of protest movements and...

Views about bioethics and the way it has developed and spread over the globe are manifold. But both patrons and critics of neoliberalism assume that ‘Western bioethics’ have shaped and dominated the formation of bioethics in the world. Neoliberal views that subscribe to the notion of a universal bioethics doubt that indigenous views in some culture...

What is biotechnology about? Simply put, biotechnology puts knowledge of life, or life itself, to use in order to sustain, repair or enhance life. The United Nations Convention on Biological Diversity1 defines biotechnology as ‘Any technological application that uses biological systems, living organisms, or derivatives thereof, to make or modify pr...

Having discussed discourses around bioethics and stem cell research and notions of risk in China and Japan in Chapters 5 and 6, this chapter focuses on the ways in which stem cell research has developed in conjunction with the provision of stem cell therapy services in India and Japan. The enterprise of clinical stem cell science constitutes a comp...

This article explores the relationship between the science community and the bioethical regulation of human embryonic stem cell research (hESR) in the laboratory and in daily life in Japan. It develops a perspective that takes into account the diversity of views among principle investigators (PIs) and scientists working in the laboratory. Deploying...

One of the features of advanced life sciences research in recent years has been its internationalisation, with countries such as China and South Korea considered 'emerging biotech' locations. As a result, cross-continental collaborations are becoming common generating moves towards ethical and legal standardisation under the rubric of 'global bioet...

The role of the state in genomic innovation in relation to global life science competition is central to understanding the moral economy of bioethics. This article asks how in China the adoption of research regulation is balanced with global competition in genomics. I argue that “competitive adaptation” plays an important role. The concept refers t...

Experimental stem cell therapy (ESCT) as a mode of therapeutic treatment is widely available in India in spite of regulatory prohibition of such practice and little scientific evidence in support of its medical efficacy. In our view, it is especially the varied institutional set-ups and modes of functioning of therapeutic service-providing centres...

This article discusses how bioethical regulation in Mainland China's life sciences has been shaped through international developments in science and regulation. The post-1978 Dengist reforms of opening up and market liberalisation have led to conditions in which scientists are open to international scientific collaborations. The need to push scienc...

This article compares and explores forms of 'public' participation in the development of bioethical governance of human embryonic stem cell research (hESR) in four Asian societies, and in doing so it contributes to the wider discussions on expertise and public inclusion. The article aims to add nuance to the concept of 'public consultation' by focu...

In this paper an attempt is made to understand common impediments in the application of two bioethical principles – informed consent and benefit sharing – in genetic and biobanking research in field situations in India. These evolving principles are discussed and addressed in contemporary national and international bioethical guidelines that reflec...

The role of women is essential in embryo creation and donation, as they undergo in vitro fertilisation (IVF) treatment for ova collection. Yet, it has often been pointed out that in the process of embryo donation women's role is largely neglected, as if embryos come from nowhere. The procedure of embryo donation in Japan is a case in point. During...

This article concerns new developments in autologous adult stem cell research in Japan and India through the notions of biohierarchy and bionetworking. It conceptualizes how human subject research in one country may be turned into experimental stem cell therapies in another through bionetworks. We analyse the processes that enable researchers in Ja...

Literature on the governance of stem cell research often assumes that improved regulation and biopolitical governance will keep stem cell research practices within the bounds of acceptable scientific development. But examples from India, Mainland China, Japan, South Korea, Taiwan and Israel illustrate how formal regulation of stem cell research pla...

The life sciences in Japan have been reappraised since late 2007 developments in human induced pluripotent stem (iPS) cell research. This article analyzes how Japan's research on fetal cells, human embryonic stem cells and iPS cells is co-produced with policies on funding, sourcing, bioethics, international regulation, and intensifying internationa...

This article examines the dichotomies of collectivism and individualism in the debates on the selective abortion of disabled fetuses, which have occurred over the last four decades in Japan. Disagreements in debates on abortion in Japan have often revolved around the concept of self-determination (jiko-kettei). These debates usually focus on whethe...

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 marke...

Healthcare service providing centers in India offer contentious stem cell-based therapies to patients for an array of medical conditions. Among strategies these centers adopt to recruit new patients from local, regional and global spheres, the most prominent is the use of “recruiter-patients.” Recruiter-patients are a group of patients who either h...

This article explores the sociocultural meanings of the embryo implied in the narratives of 58 women who have undergone in vitro fertilisation in Japan over a period from 2006 to 2008. We argue that a lack of sufficient analysis of the sociocultural meanings of the embryo result in a situation where the use of reproductive technologies in Japan adv...

The international development of human embryonic stem cell research has become closely tied to global bioethics, which places moral responsibility on stem cell researchers. This article argues that the development of bioethical regulation of human embryonic stem cell research is better understood by approaching the institutionalisation of bioethics...

This study probes into what public Chinese stem cell scientists involve in defining what is ‘good research practice’. Thomas Gieryn in 1983 argued that scientists draw up boundaries between the realm of ‘real science’ and that of ‘pseudoscience’ in order to claim and defend their own territory. The aim was to protect the autonomy of scientific rese...

This study probes into what public Chinese stem cell scientists involve in defining what is ‘good research practice’. Thomas Gieryn in 1983 argued that scientists draw up boundaries between the realm of ‘real science’ and that of ‘pseudoscience’ in order to claim and defend their own territory. The aim was to protect the autonomy of scientific rese...

This article explores the reasons for the lack of a broad discussion on bioethical regulation of human embryonic stem cell research (hESR) in Japan and asks why scientists experience difficulties accessing resources for hESR despite the acclaimed indifference of dominant Japanese culture to embryo research. The article shows how various social acto...

This article discusses how cultural concepts of marriage and reproduction play a primary role in how genetic disorders are regarded in Japan. The article examines the anxieties that accompany the taking of genetic tests in the context of Japanese cultural concepts of family, care and genetic disorders. The analysis draws on data from two studies co...

Over the last three to four years, an increasing number of private and public sector tertiary level hospitals and research centres in India have been using stem cell therapy, especially adult stem cell therapy, in the guise of experimental therapy for a variety of medical conditions. The promotion and growth of this experimental field across local...

This paper focuses on the pre-natal genetic testing and reproductive decision-making around thalassaemia in China. Findings are based on fieldwork conducted in hospitals and research institutions, interviews with families with thalassaemia-affected children, interviews with geneticists and genetic researchers and a literature review conducted betwe...

This paper highlights a number of theoretical issues relevant to this special issue of Culture, Health & Sexuality on the quality of offspring, including gender selection, ecofeminism, eugenics, reproductive agency, moral pioneering and reproductive pragmatism in China, India and Japan. First, it discusses various approaches to choice in sex select...

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...

[This volume explores four key themes emanating from Okakura Tenshin’s philosophy and legacy: Okakura Tenshin and the ideal of Pan-Asianism; other forms of Pan-Asianism; art and Asia, and ways of defining Asia. Okakura Tenshin (1862-1913) is a significant figure in Japan’s modern intellectual history., This volume explores four key themes emanating...

Developing countries have sought to profit from the Secondly, we discuss government policies on the institutional aspects of hESR that have made China relatively attractive to foreign investors compared to India. In the concluding part, we discuss various dimensions of bioethics with regards to hESR, and how governing bodies mobilise cultural resou...

In China ideology has played an important role in the research and teaching of the biological sciences since the establishment of the People’s Republic of China (PRC). After the 1978 reforms, it was recognized that the discontinuation of political interference with the sciences was essential for their survival and development. However, not much lat...

Compared to debates in the West, the debate on human embryonic stem cell research (hESR) in Japan is said to be hardly existent. According to established views, the country has no cultural canons that forbid hESR, so a debate on the status of the embryo is hardly relevant to Japanese culture. The existing debate is considered crucial to science pol...

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 a...

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 ad...

This paper analyses the e-discourse surrounding the dream of a Dutch scientist, Dr X, to create a human genetic databank in Bandung, Indonesia. Not only did Dr X hope to fulfil his dream of placing Indonesia on the genetic world map, he also aspired to set up the largest biomedical research centre in Indonesia, using blood samples gathered from var...

This article explores why and how the Chinese Academy of Social Sciences (CASS), a PRC state research-institute, survived after its involvement with the June Fourth demonstrations in 1989 through research regulation. I show how the explicit ascription of an advisory role to CASS required an increase in freedom of research and an increase in politic...