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
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.