During the course of the three years BIONET ran, one of the key aims was to encourage and assist junior researchers from China and Europe who are working in the field of ethics in biomedical research. BIONET’s aims were:
- To develop the capacities of Chinese and European graduate students in the field
- To motivate graduate students from China and Europe (particularly those with an Asian studies background) to start research in this field
- To encourage awareness of the benefits and challenges of collaborative, comparative, international research, and cross-cultural difference and similarities in bioethical framing of research in different national contexts
- To facilitate active inclusion of young and new researchers in the network
- To create an informal network of junior researchers working with some of the challenging issues surrounding the ethics of biomedical research in both China and Europe
BIONET Exchange students:
Li Rong, Reproductive Medical Centre, Peking University Third Hospital, China
“Informed Consent Regulations and Practices in Artificial Reproduction and Embryo Stem Cell research in a European context”
All informed consents must be in writing and signed by patients who receive ART treatment. It is necessary that couples be provided with full information concerning chance of success, financial obligations and other issues. If the couples have infertility problems, we will find the main problem or problems and thereby better treatment. The doctors give the couples all information for them to be able to consents including descriptions of the treating procedure – ovulation induction agents, ultrasound monitoring, collection of sperm, oocyte retrieval, luteal support and monitoring of early pregnancy. There are some problems that maybe arise during this cycle such as poor response to ovulation induction agents, unsuccessful oocyte retrieval, abnormal oocytes, fertilizing failure, failure of implantation or loss/damage to oocytes or embryos. The success rates of the clinical centre and possible complications during pregnancy should also be communicated. At the same time, research on embryonic stem (ES) cells should be actively pursued, since their potential value for clinical treatment is very great. Human ES cells have been induced to differentiate in vitro into a variety of different cell types. The derivation of embryonic stem cells involves the destruction of a blastocyst-stage embryo. Embryos that are produced by IVF for an infertile couple but are no longer required for their own or any other couple’s reproductive purposes may be donated by them for research. Without transferring to a uterus, the embryos would die within a few days. The aim of my student exchange is to see how informed consent is regulated and practiced in European countries at the IVF-stem cell interface.
Thomas Streitfellner, Life Science Governance Research Platform, University of Vienna, Austria
“Hybrid Hierarchies: Governing Regenerative Medicine as Practice in Europe and Asia”
This work analyses a contemporary project of biomedical governance through field research on two regenerative medicine research centres. Regenerative medicine is conceptualised as a transnational project with “translational stem cell research” as its platform, which aims at moving science from research to health, from basic research start-ups to the applied level of the healthcare economy. In analysing this as performance, the dissertation looks at two project sites: a reproductive stem cell engineering centre in a southern Chinese province and a centre for age-related diseases in the inner London area. How is stem cell research shaped as a bio-political-economic project in these two spaces? How are these two spaces connected? How do hybrid hierarchies emerge from these systems to replace traditional top-down approaches to science and healthcare governance?
In order to answer these questions, policy making is conceptualised as the deliberative practice of multi-level renegotiation of systemic boundary conditions rather than as a top-down engineering activity. Looking at transnational performances as confined in spatial-temporal micro-systems, the study aims to evaluate policy as the deliberative practice of distinct political epistemic communities in probing their relation to the respective macro-systems. The underlying theoretical framework considers a governance system as a distinct assemblage of discursive and non-discursive elements connecting aspects of virtuality and actuality through practice. In applying a policy-focussed ethnographic approach, film footage from public speeches, meetings, conferences, visits to biotech-sites, policy documents and research interviews are utilised to introduce elements of the immediacy of everyday practice into the comparative analysis of hybrid governance systems.
Joy Zhang, BIOS Centre, London School of Economics and Political Science, UK
“China Stem Cell Regulation and Related Ethical Issues”
As stem cell technology has been put into a wide range of clinical practice in China, current Chinese policies on stem cells have shown their deficiency. So far there has been no legislation but only two ethical guidelines in China regarding stem cell research. However, with the pressure of engaging in global communication, to maintain Chinese scientific competitiveness, and adapt biotechnology with the Chinese traditional cultural, Chinese government has set out an agenda to reinforce regulations on biotechnology. More specifically, China is expected to devise comprehensive ethical criteria by 2010 to regulate cloning, embryonic stem cells research, and related clinical uses. Therefore, the progress of stem cell regulation in China presents an excellent case study on the cultural specificity of ethical issues arising in the context of innovative biomedical research and practice. By analysing data from media and news coverage, visiting stem cell laboratories, stem cell bank, hospitals and interview with medical researchers and patients, this project will not only identify the cultural motivation and ethical origins of Chinese ambivalent attitudes towards stem cells, but also portrait the value system “at work” in Chinese biomedicine policy making.
Chen Haidan, Zhejiang University, Hangzhou, China
“Regenerating China: Stem Cell Politics in Transition”
The global politics of human embryonic stem cell research over the past five years has been big concerns for policy-makers and social scientists world-wide. On December 24, 2003, the Ministry of Science and Technology and the Ministry of Health, People’s Republic of China promulgated ethical guidelines for research on human embryonic stem cells. Any research activity related to human embryonic stem cells conducted by investigators from any institution or in any sector, in the territory of the People’s Republic of China shall abide by the “Guidelines”. It prohibits any research aiming at human reproductive cloning, and sticks to “14-day-limit”. It is prohibited to combine human gametes with the gametes of any other species. Meanwhile, China has its own unique models of stem cell regulation currently in use in terms of its legislative, organizational, social-political and cultural-historical components. China is investing heavily in biomedical and biotech research with the aim of positioning itself as a serious competitor in the global scientific and biotechnological market (Salter, et al. 2006). However, technological advances in stem cell research have been remarkable, and medical developments in stem cells are evolving much more rapidly than the conventional policy and regulatory systems. How can China meet the global economic, political and bioethical challenges and opportunities afforded by stem cell field?
Su Yeyang, Beijing Institute of Genomes, Chinese Academy of Sciences, China
“Biomedical Research–Best Practice in Reality”
With in hand the fundamental knowledge achieved by the International Human Genome Project and the International HapMap Project, bioscience scientists and researchers can finally stride towards encoding the universal secrets of human heritage. The first desire needs to be fed is to find the answers of the start and the development of diseases, which have brought tons of pains to patients and their families in the human history. Beyond all the scientific questions, one critical ethical question requiring answers from biomedical scientists and researchers is that, how to conduct biomedical research ethically approvable? Although there are already national, regional and international guidelines, regulations and even laws, no handbook can tell how to put such best practice into reality. My interest is particularly in finding out, for scientists and researchers, how to put those guidelines into practice, and what indeed is the best practice in real life? Since the real life is complex and the research conditions are various from nation to nation, answers to that same question must be, at lest slightly, different among biomedical scientists and researchers from different countries. I will start my study with the hope to facilitate the dialogues between EU and Chinese biomedical scientists and researchers who pay serious attention on ELSIs raised by biomedical study and would like to share their experience in dealing with those ethical issues in their research. It is exciting to collect opinions from different persons in this community and worthy trying to deep understand the ethical principles that have been emphasized for couples of years.
Sui Suli, International Institute for Asian Studies, Leiden, The Netherlands
“Research on the Practice of Genetic Counselling in the UK – comparing governance and practice of genetic counselling in China and the UK”
The fast development of genetic testing technologies makes the provision of genetic counseling increasingly urgent. Based on my research on Chinese genetic counselling, my research visit to the UK will compare British/western and Chinese styles of genetic counselling. The object of the research is: 1. To understand professional genetic counselling in UK and its practice. 2. To compare the similarities and differences of genetic counselling, especially on the cultural, economical aspects of genetic counselling in China and UK. 3. To gain a better understanding of the features and effects of genetic counselling and its impact for family and society in Chinese contexts through the comparison. The main questions are: what qualifications are required to be a professional genetic counsellor and what are the tasks of the counsellor in UK? What is the purpose and expectation of the patients/counselees? What is the procedure of genetic counselling in practice? How do counsellors explain the nature of the disorder and risk estimate to individuals and their families? What kinds of communication skills do the counsellors adopt? For instance, in the case of MD, how does the counsellor describe X-linked disorder? Is there a “well-intentioned lie hiding” in the counselling? If there is, how do doctors balance truth-telling and well-intentioned lying? How do counsellors give advice to the patients on their reproduction-decision? How do patients respond to the advice from the counsellor?
Anika Mitzkat, Institute for Nursing Science, Department for Medicine, University of Witten/Herdecke, Germany
“Views on embryo donation in China”. Download Anika Mitzkat’s final report
One of the key questions of the BIONET project is “how can vulnerable patients who are in a desperate situation (as is often the case with both ART and stem cell therapy patients) be safeguarded against risks of inducement and exploitation?” (BIONET 2008). On the ground of ongoing studys in the UK and Switzerland (Scully et al 2007; Haimes et al 2008) I used the BIONET student exchange project for a pilot study about the patients’ views on embryo donation for embryonic stem cell research (ES). Concerning the ethical implications of in vitro fertilisation (IVF), a vast quantity of theoretical literature can be be found. Compared to that, there is a lack of empirical knowledge, which could substantiate the ethical point of view and the perceptions and understandings of those involved. Data from the ongoing European studies underline that the specific situations, understandings and expierences of couples undergoing IVF are morally significant, in particular with regard to so-called “spare” embryos and to the option of stem cell donation. AIM: The aim of the study was to give an insight into the experiences of couples undergoing IVF treatment who were asked to donate a spare embryo to stem cell research. The short-term objective of the project was to understand the individual situation and decisions of the interviewees. METHODS: The project can qualify as an exploratory pilot study. It follows a qualiative design with a phenomenological approach. Data were collected by expert interviews, observation of the setting and patient interviews. Patient interviews were translated simultaniously, audiotaped, transcribed and analysed. Interviews with experts from each department (clinical department, genetic center, reproductive center and sperm bank) of the Genetic hospital of CITIC Xiangya took place. Observation took place at the clinical department. It was possible to participate in physicians-patients interviews. RESULTS: Expert interviews and observation not only gave an insight to the routine procedures of IVF treatment at the genetic hospital but also were necessary to build up a trustful relationship which allowed to get in contact with the patients. Five interviews with women who recently received IVF treatment took place. Themes that emerged from these interviews were “the desire and pressure to have a baby”, “the diffinition of the embryo” and the views on “donating embryos for scientific research”. DISCUSSION: Due to the limited number of interviews and specific circumstances such as the translation from and to Chinese it is not possible to draw general conclusions from this work. However the results give some helpful indications for planning further research. It is also possible to compare the results of this pilot study with those from the studies in Europe. Certain striking differences and also similarities could be found concerning the mentioned emerging themes, e.g. in the perceptive contexts and in the definition of the embryo.
Megan Allyse, Institute for Science and Society, University of Nottingham
“The Ethics of Policy, a Policy of Ethics: the development of ethics-based governance of controversial medical research in the US, the UK and China”
Recent developments in embryological research have ignited firestorms of public debate on local, national and international levels. Many feel that governments ought to exercise control over the conduct of such research, but many States find that secular–based political structures are poorly designed for ethically complex decision-making. Modernist social theorists like Jurgen Habermas, Ulrich Beck and Hans Jonas contend that the State must respond by developing more collaborative governance structures designed to incorporate not only public opinion and the pace of scientific research but moral and ethical reasoning. This project uses the case study of debates over egg donation for therapeutic human cloning to explore the development of such structures. How does the State response to the dilemmas presented, to both individuals and societies, by egg donation for research differ between the US, the UK and China? How are research donors constructed in these arenas? What inferences can be drawn from the case study of SCNT research to advise the process of regulating emerging medical technologies more generally? And finally, does the regulation of research donation for SCNT research in the US, UK and China display characteristics of novel developments in the fields of normative formulation, regulation and risk management? Methods include policy and document analysis and on-site investigation and interviews with scientists, policy-makers, bioethicists and regulators in all three countries. A comparative analysis is sought, using criteria elucidated in recent governance literature, of how the controversy surrounding these morally complex technologies is encouraging the creation of new kinds of collective decision-making bodies. How do these bodies develop, even among widely varied government systems, and what do they mean for the future of the relationship between science and government?
Ginny He, Institute of Reproduction and Stem Cell Engineering, Central South University, Changsha
“The psychosocial context of embryo donation for research during infertility treatment”
The rapid development of ART has made positive contributions to remove the agony of those who suffer from reproductive dysfunction, to realize the desire of having a healthy child and to boost the development of human beings in a healthy way. As more and more people are having infertility problems due to social, medical, environmental and other factors, and although psychosocial factors are not the direct cause of infertility, most patients have psychosocial characteristics which change in different treatment stages often affecting their treatment. I am going to study the relationship between psychosocial status of the patients and their treatment process and results and their attitudes towards spare embryos. We have done some investigations on the psychosocial status of the patients in our hospital during their different treatment stages and I’d like to make a comparison with the practice in European countries. Based on the following points:
1. The psychosocial characteristics of infertile women including fertility viewpoints, personality, social supports, coping styles and emotions and analysis correlative factors of their emotions.
2. The emotional characteristics of in vitro fertilization (IVF) women at different stages and the effects on the outcome of IVF.
3. The role of infertile women in continuing the family line and bearing a child.
4. The different attitudes of IVF-ET patients to donate spare embryos for scientific research and how this affects their psychosocial characteristics
The following points will be investigated through interview conversations with patients in IVF-ET cycle on ET day.
1) The attitude of patients who are willing to donate their embryos.
2) The attitude of patients who are not willing to donate their embryos.
3) The attitudes of infertile patients towards adopting children after failing in IVF treatment.
The above study will be helpful for the psychological consultancy and treatment of infertile patients in order to relieve their psychosocial pressure and receive a better treatment and also to investigate whether there are ethical issues related to possible psychological stress from embryo donation.
Achim Rosemann, Department of Social Anthropology, University of Sussex
“Spaces of Translation: International Research Partnerships in Neuroregenerative Medicine”
Achim’s research focuses on the formation of a research economy for innovations in neuro-regenerative medicine across Mainland China, Taiwan, Hong Kong and the US. By zooming in on international partnerships in the fields of spinal cord injury and stroke research, he explores processes of standardisation, capacity building and economic exchange, as well as challenges related to cross-cultural teamwork, joint-leadership and community building. His research methods comprise participatory, observational and interview approaches, as well as survey and document-based research.
Wang Chunshui, Centre for Bioethics, Chinese Academy of Social Sciences/Peking Union Medical College
“Ethical and Social Aspects in Neuroscience: Focus on Medical Interventions of Brain”
Neuroscience, arising from the interdisciplinary collaborations of anatomy, physiology, pharmacology and psychology, has been challenging previously maintained notions about the structure and function of nerve and the nervous system, the nature of the brain-mind-self relationship, and the intersection of neuroscience, ethics and society. Neuroscience is raising not only hopes of new insights into the human brain, cognitive processing, human memory, learning, performance, and judgement, but also treatments for some previously intractable conditions. It has led to innovations in clinical medicine that have not only therapeutic but also non-therapeutic dimensions.
Medical interventions of brain based on the results obtained in, and also being part of neuroscience including pharmacological treatment of depression, attention or memory deficit disorder which led to the enhancement of cognition, mood and vegetative state, brain/psychosurgery for treating mental diseases or drug addictions and brain-reading (fMRI) for detecting dysfunction raised new social and ethical issues of current and near-term priority. These issues may involve safety, long-term or delayed side effects, informed consent, privacy, freedom or coercion, equal opportunity, medicalization of inner life, etc. for individuals; fair distribution, capacity divide, widen gap between rich and poor, raising our standard of normalcy, disadvantaged more worsen, etc, for the society; even including issue that should we improve ourselves with medical interventions beyond the limit of human nature?
During my study I want to:
1. Identify what are major social, ethical and governance issues in the medical interventions of brain?
2. Learn the methodology of social studies and other relevant methods.
3. Learn how to address these issues.