Bionetworking in Asia - International collaboration, exchange, and responsible innovation in the life sciences

DOI

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: 1. What kind of exchange networks are forged around stem cell science, banking and therapy provision? 2. What are the socio-cultural and politico-economic processes that underlie patient recruitment strategies? 3. What are the consequences of the unequal position of negotiation in international science collaborations for the development of stem cell therapies and research? 4. How does bionetworking in patient recruitment affect bioethics interpretation, such as notions of informed consent and patient autonomy in different settings? 5. How can we harmonise local definitions of bioethics without damaging the only ‘viable’ options available to the resource poor and desperate? In short, the data collections contains interview and group-meeting data on the networks between research centres, companies and tissue banks, collecting information on the kinds of exchanges and aims of these exchanges. The project Bionetworking in Asia aims to uncover how international life science collaborations deal with ‘differences’ between research institutions in countries with high- and low-incomes. It examines how public health concerns and policies, and varying healthcare systems and epidemiological analyses are reflected in the needs, preferences and behaviour of stakeholders and established international research standards. It further investigates how these differences translate into the bargaining position of researchers, patients and scientists. Building on observations of scientists, managers and patients, it analyses ways in which regional differences and inequalities play a role in the ‘bionetworks’ used for patient recruitment and international research agreements. Bionetworking is a social entrepreneurial activity involving biomedical research, healthcare and patient networks that are maintained by taking advantage of regionally differences in levels of science and technology, healthcare, education and regulatory regimes. The research uses methods of participant observation, interview, backward mapping, option creation, and social network analysis to examine international science collaborations in the fields of experimental stem cell therapies and biobanking in Asia. The research results aim to reveal how knowledge of informal patient-, research- and hospital networks can be translated into improved guidance for research collaboration, patient support and policy guidelines.

• Semi-structured interviews with stem cell researchers, medical professionals, bio-bankers and ethicists in China, South Korea, Japan, India, Malaysia, Netherlands, UK • Deliberative workshop: stakeholder groups in stem cell research and patient were invited to discuss, debate about patient needs using the method of option generation and annotated consensus • Round-table discussions in South Korea, China and India: regulators, stem cell scientists, patient group representatives and medical professionals were invited to discuss patient needs in relation to regenerative medicine.

Identifier
DOI https://doi.org/10.5255/UKDA-SN-851908
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=3b0d01207ce7adb4200e752f8f1d96aaaae6cd4d5f43e1d7e1123207f4cd8b1d
Provenance
Creator Sleeboom-Faulkner, M, University of Sussex; Sui, S, University of Sussex; Patra, P, University of Sussex; Kato, M, University of Sussex; Chang, H, University of Sussex; Heitmeyer, C, University of Sussex; Chaishinthop, N, University of Sussex
Publisher UK Data Service
Publication Year 2015
Funding Reference ESRC
Rights Margaret E Sleeboom-Faulkner, University of Sussex; The Data Collection is available for download to users registered with the UK Data Service.
OpenAccess true
Representation
Language English
Resource Type Text
Discipline Social Sciences
Spatial Coverage Asia, UK; United Kingdom; China; Taiwan; Japan; Thailand; South Korea; India; Malaysia; Netherlands