The large grey area between ‘bona fide’ and ‘rogue’ stem cell interventions — ethical acceptability and the need to include local variability

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 clinical stem cell trials and stem cell experimentation, the experimental space where patients, medical professionals and life scientists negotiate for diverging reasons and aims, I show why idealised notions of ethics are not feasible for many stem cell scientists in low- and middle-income countries. Drawing on fieldwork in China from 2012 to 2013, the article asks why ‘the unethical’ according to some is acceptable to Chinese life scientists. The case study of stem cell service provider Beike Biotech illustrates how stem cell interventions take place in a large grey area, where narrow notions of ethics are blurred with and supplanted by broader notions of ethics, co-determined by estimations of socio-economic, political and cultural understandings of risk, opportunity and benefit. I borrow the term ‘bionetworking’, understood as the entrepreneurial aspects of scientific networks that engage in creating biomedical products, to analyse various forms of medical experimentation. I speak of the ‘externalisation’ and ‘internalisation’ of local factors to elucidate how features of patient populations and their environments are subsumed in clinical research applications. Compared to polarised views of stem cell therapy, this approach increases the transparency of clinical interventions and broadens our understanding of why ‘stem cell tourism’ to some is ‘stem cell therapy’ to others

Genetic testing, governance, and the family in the People's Republic of China

In western countries the rise of genetic testing has been accompanied by ethical arrangements like autonomy and informed consent that help to dissociate genetics from eugenic policies. However, critics have argued that this trend to increase individual choice should be considered as a neoliberal governance strategy to promote bio-citizenship. These western concepts are often used to discuss genetic testing in the Peoples Republic of China as well. Chinas population policy has a reputation for condoning eugenic practices and for ruthless one-child and family planning policies, but there have been many reforms recently, which, together with the revival and development of traditional religions and beliefs, have complicated the discussion about the meaning of the Chinese family. In this context, the introduction of genetic testing in China has been linked to state eugenics as well as post-reform neo-liberalist governance. Based on fieldwork and various archival and literature studies it explores genetic testing in five different Chinese contexts. The analysis makes clear that, although population planning in China proceeds from the idea that the planning of family health leads to a healthier population, traditional beliefs, individual initiative, group pressure, commercial organisations and state policies make for an amalgam of genetic testing practices that cannot be understood in terms of eugenics or liberal governance

Genetic testing, governance, and the family in the People's Republic of China

In western countries the rise of genetic testing has been accompanied by ethical arrangements like autonomy and informed consent that help to dissociate genetics from eugenic policies. However, critics have argued that this trend to increase individual choice should be considered as a neoliberal governance strategy to promote bio-citizenship. These western concepts are often used to discuss genetic testing in the Peoples Republic of China as well. China's population policy has a reputation for condoning eugenic practices and for ruthless one-child and family planning policies, but there have been many reforms recently, which, together with the revival and development of traditional religions and beliefs, have complicated the discussion about the meaning of the Chinese family. In this context, the introduction of genetic testing in China has been linked to state eugenics as well as post-reform neo-liberalist governance. Based on fieldwork and various archival and literature studies it explores genetic testing in five different Chinese contexts. The analysis makes clear that, although population planning in China proceeds from the idea that the planning of family health leads to a healthier population, traditional beliefs, individual initiative, group pressure, commercial organisations and state policies make for an amalgam of genetic testing practices that cannot be understood in terms of eugenics or liberal governance.China Genetic testing Family Neoliberalism Eugenics Governence Thalassemia Duchenne muscular dystrophy (DMD)

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(6), 781-795, 1983). This article builds on, redefines and extends Gieryn's concept of 'boundary-work' to apply to and include boundaries between ethical and non-ethical science, while emphasising the global scope of boundary work. It shows how scientists use both 'science' and 'bioethics' boundaries to demarcate their own territory and to exclude certain publics from debate in the field. By elaborating Gieryn's concept of boundary work in the new and different context of bioethical science regulation, the article shows how Chinese stem cell scientists, by using both kinds of boundaries 'between science and pseudoscience and between ethical and non-ethical science' at the same time welcome and abhor bioethical research regulation. This article also indicates the need to understand this extended form of boundary making in terms of global science collaboration and competition. It shows how the self-awareness of scientists as global actors in stem cell science has led to a moral economy of science and ethics involving global boundaries rather than local conditions. Such boundary making does not just function to strengthen group identity and to elicit political support; it is also mobilised to direct and, in many cases, to ward off discussion with bioethicists and the public