Bionetworking in Asia: Patient Recruitment & Therapy Practices
Bio-medical innovation makes a substantial contribution to modern welfare societies and economies in the Western world. But the organisations that lead such research are increasingly reliant on clinical research conducted beyond the West. Although the number of collaborations between Western and Asian research institutions has grown rapidly, such initiatives are challenged by uncertainties about research quality and therapeutic practices in Asian countries.
The Bionetworking in Asia – ESRC project (December 2011 through May 2015) is concerned with patient recruitment strategies and therapy practices. This 3-year project will shed light on theincreasingly important role of bionetworking in the recruitment of stem cell therapies and in the exchange of biomaterials.
Bionetworking is crucial to lucrative patient recruitment activities by researchers involved in experimental therapies, and it differs from the organisation of clinical trials by Clinical Research Organisations (CROs), for which the experimental nature is usually clear and for which patients are not charged: Bionetworking is based on the ambiguity that exists between clinical research (knowledge experimentation) and clinical therapies (providing care). In the performance of clinical research trials efforts are usually put into keeping trials as ‘scientific’ as possible, so that deviations and adjustments to field sites are understood as part of the external factors of trials. By contrast, experimental stem cell therapies (ESCTs) benefit from the ambiguity and variability of ‘external’ factorsexternal to field sites including regulatory conditions and political regimes.
Over a prolonged period of time, bionetworkers create links between institutions in various countries and regions: hospitals, patient groups and research centres are linked into large medical networks. At the same time, government institutions, universities, and international research and funding agencies provide knowledge and support sustaining the networks. While an ideal-typical clinical trial is based on the reciprocal, participatory engagement across different worlds of experience, bionetworking works through the competition, differences and polarised interests across national and regional boundaries.
To understand the reasons for the differences in the quality of therapy provision we need to grasp (a) the tension between the reputation and expertise of scientist; (b) the quality of the research environments; (c) the scientific aims behind clinical trials and therapies; and (d) the needs and preferences of patients.
Our main research questions are:
- What are the socio-cultural and politico-economic processes that underlie patient recruitment strategies?
- What are the consequences of the unequal position of negotiation in international science collaborations for the development of stem cell therapies and research?
- How does bionetworking in patient recruitment affect bioethics interpretation, such as notions of informed consent and patient autonomy in different settings?
- How can we harmonise local definitions of bioethics without damaging the only ‘viable’ options available to the resource poor and desperate?