Margaret Sleeboom-Faulkner
Biographic Data
| ID | 84398 |
|---|---|
| NAME | Margaret Sleeboom-Faulkner |
| GIVEN NAMES | Margaret |
| FAMILY NAME | Sleeboom-Faulkner |
| SIGNATURE | SLEEBOOM-FAULKNER M |
| AFFILIATIONS | University of Sussex |
| ORCID | 0000-0002-5342-8559 |
| VERIFIED | Yes |
| TOTAL WORKS | 49 |
| TOTAL CITATIONS | 107 |
| AUTHOR COUNT | 49 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2006 |
| LATEST PUBLICATION YEAR | 2023 |
| H-INDEX | 7 |
Ethnographic responsibility: Replies to Herzfeld (At 39[3])
Heritable Genome Editing in a Global Context: National and International Policy Challenges
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 …
Regulatory brokerage: Competitive advantage and regulation in the field of regenerative medicine
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 difference. This article is based on social science research in Japan, Thailand, India and the UK. Using fi…
Guidelines for data management and scientific integrity in ethnography
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 the most basic principles of doing such research. They show that the primary response of ethnograph…
Data management in anthropology: The next phase in ethics governance
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 consider the way the social relationships of research are properly maintained. As a springboard, the …
Motivations for seeking experimental treatment in Japan
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 linked to somatic identity, we argue that gaining a cure also means a new social normality, which for som…
Hybrid UCB banks in China – public storage as ethical biocapital
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 tha…
The Impact of the New Eu GDPR on Ethics Governance and Social Anthropology
Genomics and genetic medicine: Pathways to Global Health
This special issue of Anthropology and Medicine contributes to emerging anthropological research examining the expanding terrain of genomic research and genetic medicine as a product of and vector
The justification of studies in genetic epidemiology - political scaling in China Medical City
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 epidemiology. It does so, first, by identifying potential overgeneralizations of data, often due to mi…
Bionetworking and Strategic Linking between India and Japan: How Clinical Stem Cell Intervention Continues despite New Regulatory Guidelines
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 relationship, its possession of specialized skills and knowledge, and its ability to maneuver other…
Have We Become Too Ethical: International symposium at Sussex and colloquium at Durham Universities
The formalization of social-science research ethics: How did we get there
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 social science research is valued for and motivated by its expert engagement with moral questions …
Following the banking cycle of umbilical cord blood in India: The disparity between pre-banking persuasion and post-banking utilization
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 waste, gift, biological insurance, enclaved good, source of saving lives and commodity through various p…
Comparing national home-keeping and the regulation of translational stem cell applications: An international perspective
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 instruments in the stem cell field are developed in practice. We examine this discrepancy using the n…
Translating ‘Asian’ Modes of Healing and Biomedicine
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 nonscience, globalization and locality, innovation and cultural heritage, to translating them in terms of assemblages, products, modes of resistance,…
Governance of Stem Cell Research and Its Clinical Translation in China: An Example of Profit-Oriented Bionetworking
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 evolution of the network activities of for-profit providers of stem cell therapy in the context of the…
Commercial Genetic Testing and its Governance in Chinese Society
Bioethical Governance in South Korea: Tensions between Bottom-Up Movement and Professionalization and Scientific Citizenship
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 scandal and the increased bureaucratic control of research that followed have challenged the developmen…
The Twenty-First-Century Gift and the Co-circulation of Things
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 exchanges should be studied as differently conditioned exchange flows across multiple boundaries. To…
Regulating ‘Respect’ for the Embryo: Social Mindscapes and Human Embryonic Stem Cell Research in Japan
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 Eviatar Zerubavel’s notion of social mindscapes and the notion of mindsets, I elucidate the relatio…
Discursive dialects of bioethics: Understanding the institutional embeddings of human stem cell experimentation in India
Experimental Ethics: Emergent themes and issues in life sciences research in Asia
Latent science collaboration: Strategies of bioethical capacity building in Mainland China's stem cell world
Competitive Adaptation: Biobanking and Bioethical Governance in China Medical City
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 to a mode of innovation that reworks bioethics in a way that avoids a loss of competitiveness. In con…
Experimental stem cell therapy: Biohierarchies and bionetworking in Japan and India
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 Japan to discard a therapy as being of reputational risk, while researchers in India employ it so that…
Genetic testing, governance, and the family in the People's Republic of China
Guidelines for data management and scientific integrity in ethnography
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 the most basic principles of doing such research. They show that the primary response of ethnograph…
From global bioethics to ethical governance of biomedical research collaborations
Comparing national home-keeping and the regulation of translational stem cell applications: An international perspective
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 instruments in the stem cell field are developed in practice. We examine this discrepancy using the n…
The formalization of social-science research ethics: How did we get there
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 social science research is valued for and motivated by its expert engagement with moral questions …
Meanings of the embryo in Japan: Narratives of IVF experience and embryo ownership
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 advances without reflecting upon the voices of women and couples that use them. Additionally, we argue …
Bionetworking: Experimental stem cell therapy and patient recruitment in India
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 and national borders traverses regulatory, ethical, social and financial boundaries. In this complex…
Debates on Human Embryonic Stem Cell Research in Japan: Minority Voices and their Political Amplifiers
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 policy-makers, though monopolized by the voices of only a few social groups. Three such minority voices…
The Impact of the New Eu GDPR on Ethics Governance and Social Anthropology
Genomics and genetic medicine: Pathways to Global Health
This special issue of Anthropology and Medicine contributes to emerging anthropological research examining the expanding terrain of genomic research and genetic medicine as a product of and vector
The Twenty-First-Century Gift and the Co-circulation of Things
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 exchanges should be studied as differently conditioned exchange flows across multiple boundaries. To…
Governance of stem cell research: Public participation and decision-making in China, Japan, South Korea and Taiwan
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 focusing on the contested meanings and relationships through which public roles and public debates are d…
Dichotomies of collectivism and individualism in bioethics: Selective abortion debates and issues of self-determination in Japan and 'the West
Ova collection in Japan – making visible women's experience in male spaces
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 field research in Japan, we found that women were of the view that the procedures of embryo donation…
Regulatory brokerage: Competitive advantage and regulation in the field of regenerative medicine
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 difference. This article is based on social science research in Japan, Thailand, India and the UK. Using fi…
Commercial Genetic Testing and its Governance in Chinese Society
Eugenic Birth and Fetal Education: The Friction Between Lineage Enhancement and Premarital Testing Among Rural Households in Mainland China
Collecting Families: An Institutional Approach to Human Genetic Biobanking in Indonesia
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 various laboratories, medical centres and the jungle. His most important project was to study genes for…
How to Define a Population: Cultural Politics and Population Genetics in the People's Republic of China and the Republic of China
Regulating Intellectual Life in China: The Case of the Chinese Academy of Social Sciences
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 political steering through regulation. I do this by comparing the institutional setting of CASS in the earl…
Collecting Families: An Institutional Approach to Human Genetic Biobanking in Indonesia
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 various laboratories, medical centres and the jungle. His most important project was to study genes for…
The Changing Nature of Ideology in the Life Sciences in Mainland China: Case-studies of Human Cloning and Human Embryonic Stem Cell Research (hESR) in Medical Textbooks (1996–2005)
Debates on Human Embryonic Stem Cell Research in Japan: Minority Voices and their Political Amplifiers
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 policy-makers, though monopolized by the voices of only a few social groups. Three such minority voices…
Cultures of Marriage, Reproduction and Genetic Testing in Japan
Bionetworking: Experimental stem cell therapy and patient recruitment in India
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 and national borders traverses regulatory, ethical, social and financial boundaries. In this complex…
National risk signatures and human embryonic stem cell research in mainland China
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 in terms of risk perceptions of stem cell scientists. Eschewing approaches that understand bioethic…
Boundary Making and ‘Good’ Stem Cell Research (SCR) in Mainland China: Including Bioethics, Excluding Debate
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 research and to elicit financial support and political backup (Gieryn, American Sociological Review, 48(…
Reproductive technologies and the quality of offspring in Asia: Reproductive pioneering and moral pragmatism
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 selection, focusing on an instrumentalist and an ecofeminist approach. Second, it discusses issues of repr…
Choosing offspring: Prenatal genetic testing for thalassaemia and the production of a ‘saviour sibling’ in China
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 between September and November 2007. The paper aims to provide insight into the ways in which those who c…
Eugenic Birth and Fetal Education: The Friction Between Lineage Enhancement and Premarital Testing Among Rural Households in Mainland China
Contested Embryonic Culture in Japan—Public Discussion, and Human Embryonic Stem Cell Research in an Aging Welfare Society
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 actors express their views on the embryo and oocyte donation in terms of dominant Japanese culture, foil…
Regulating cell lives in Japan: Avoiding scandal and sticking to nature
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 international competition. I argue, first, that regulation of human embryonic stem cell research (hESR) in Japan…
Recruiter-patients as ambiguous symbols of health: Bionetworking and stem cell therapy in India
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 have already received or are in the process of receiving the therapy and, importantly, are used by se…
Looking beyond the regulatory exteriors of stem cell research in Asia – discussion
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 plays out differently in practice, showing that the standardization of stem cell research in fact creat…
Stem cell research in Asia: Looking beyond regulatory exteriors
The great hurry to realise promised cures in stem cell research requires regulation to guarantee bioethical research practices. Yet, increasingly similar national guidelines for stem cell research yields a range of diverging research practices. This book shows how the different rationale of regulation affects stem cell research practices in Asia. In low- and medium income countries such as India and China the advancement of science has a differen…
Experimental stem cell therapy: Biohierarchies and bionetworking in Japan and India
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 Japan to discard a therapy as being of reputational risk, while researchers in India employ it so that…
Dichotomies of collectivism and individualism in bioethics: Selective abortion debates and issues of self-determination in Japan and 'the West
Genetic testing, governance, and the family in the People's Republic of China
Meanings of the embryo in Japan: Narratives of IVF experience and embryo ownership
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 advances without reflecting upon the voices of women and couples that use them. Additionally, we argue …
Ova collection in Japan – making visible women's experience in male spaces
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 field research in Japan, we found that women were of the view that the procedures of embryo donation…
Governance of stem cell research: Public participation and decision-making in China, Japan, South Korea and Taiwan
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 focusing on the contested meanings and relationships through which public roles and public debates are d…
Regulating ‘Respect’ for the Embryo: Social Mindscapes and Human Embryonic Stem Cell Research in Japan
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 Eviatar Zerubavel’s notion of social mindscapes and the notion of mindsets, I elucidate the relatio…
Discursive dialects of bioethics: Understanding the institutional embeddings of human stem cell experimentation in India
Political science (45 works) · Law (37 works) · Sociology (37 works) · Biomedical Ethics and Regulation (29 works) · Law (25 works) · Biology (23 works) · Bioethics (15 works) · Corporate governance (15 works) · Social science (15 works) · Ethics in Clinical Research (14 works)