The Socio-genetic marginalization in Asia programme (SMAP)

SMAP, the Socio-genetic Marginalization in Asia Programme, which started off in August 2004, is a research programme set up with the support of the Netherlands Science Organisation (NWO), IIAS, and the Amsterdam School for Social Science Research (ASSR). Exploring cultural, social and economic aspects of the role of genetic technologies played in the area of state organisation, population policies, health care systems and research regulation in China, India and Japan, SMAP is expected to shed light on how differences in the application of modern genetic technologies generate different practices. The programme focuses on: (I) the ways in which (universal) regulation for genetic sampling by international companies and universities leads to disputable research practices among vulnerable populations; (II) how bioethical differences between healthcare systems are expressed in the different meanings allocated to concepts, such as informed consent, health, and family values; and, (III) the consequences of development priorities and practices of genetic screening for the livelihood and identities of diverging social groups

The justification of studies in genetic epidemiology: political scaling in China Medical City

Genetic epidemiology examines the role of genetic factors in determining health and disease in families and in populations to help addressing health problems in a responsible manner. This article uses a case study of genetic epidemiology in Taizhou, China, to explore ways in which anthropology can contribute to the validation of studies in genetic epidemiology. It does so, first, by identifying potential overgeneralizations of data, often due to mismatching scale and, second, by examining its embedding in political, historical and local contexts. The example of the longitudinal cohort study in Taizhou illustrates dimensions of such ‘political scaling’. Political scaling is a notion I use to refer to the effects of scaling biases in relation to the justification of research in terms of relevance, reach, and research ethics. The justification of a project on genetic epidemiology involves presenting a maximum of benefits and a minimum of burden for the population. To facilitate the delineation of political scaling, I make an analytical distinction between donating and benefiting communities, using the notions of ‘scaling of relevance’, ‘scaling of reach’ and ‘scaling of ethics’. Political scaling results at least partly from factors external to research. By situating political scaling in the context of historical, political and local discourses, anthropologists can play a complementary role in genetic epidemiology

Regulatory brokerage: competitive advantage and regulation in the field of regenerative medicine

This article concerns the roles of entrepreneurial scientists in the co-production of life science research and regulation. Regulatory brokerage, defined as a mode of strategic planning and as the negotiation of regulation based on comparative advantage and competition, is expressed in scientific activities that take advantage of regulatory difference. This article is based on social science research in Japan, Thailand, India and the UK. Using five cases related to Japan’s international activities in the field of regenerative medicine, I argue that, driven by competitive advantage, regulatory brokerage at lower levels of managerial organization and governance is emulated at higher levels. In addition, as regulatory brokerage affects the creation of regulation at national, bilateral and global levels, new regulation may be based on competition in regulatory advantage rather than on ethical and scientific values. I argue that regulatory brokerage as the basis for regulatory reform bypasses issues that need to be decided by a broader public. More space is needed for international and political debate about the socio-political consequences of the global diversity of regulation in the field of the life sciences

‘Have we become too ethical?’: International symposium at Sussex and colloquium at Durham Universities

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Assessment of Pain in adults with cognitive impairment : a review of the tools

The aim of this paper is to discuss the results of a review into the literature related to chronic pain and the older adult. Several themes within the review have been identified and reported elsewhere and the final report has been published by the University of Sheffield in the form of an annotated bibliography. This report focuses upon the findings of the in relation to the assessment of pain in the adult with cognitive impairment. Issues surrounding assessment in the non-cognitively impaired older adult have also been reported elsewhere. For this paper nine studies will be discussed which report the development and testing of pain assessment scales the focus of which is upon behavioural indicators of pain. Some scales have been omitted from the review and the rationale for this decision will be discussed. Each of the selected scales will be discussed and the authors will make recommendations for both clinical practice and for future research based upon the validity, reliability and user friendliness of the scales. From the paper it can be concluded that the Abbey, DOLOPLUS-2 and PACSLAC appear to be the most reliable and valid and in terms of the “user friendliness” would be appropriate to explore further. Recommendations are made for further multi-centre evaluation of these scales.University of Sheffiel

Assessment of pain in older people : where are we now and what needs to be done?

The purpose of this paper is to present the findings of a review of the literature into pain and older people. The funded study was part of the development of an annotated bibliography published in August 2005. The review included all major databases and involved the collection of 214 papers between the dates of 1995 and 2005. The papers were divided into several major themes, which include experiences, management (pharmacological and non-pharmacological), assessment, and attitudes. Within this paper, the results of the review into pain assessment will be discussed, which includes 42 of the collected papers. The other sections will be published later. The paper will discuss issues pertaining to the development of specific tools for older people, a discussion of tools already available, comparisons of staff versus older people’s perceptions of pain scales, and articles with cognitive impairment as a focus. Recommendations for further study are made.University of Sheffiel

Bionetworking and strategic linking between India and Japan: how clinical stem cell intervention continues despite new regulatory guidelines

Based on a case study of a clinical stem cell intervention (CSCI) center in Chennai, India, this article explores distinct entrepreneurial strategies for the promotion of unrecognized clinical stem cell applications in India. It shows that the center—an Indo-Japanese joint-venture—is able to promote the CSCI due to its central position in a network relationship, its possession of specialized skills and knowledge, and its ability to maneuver other actors in the network and to identify and utilize their latent value. We examine the developmental history of the making and remaking of regulation and the shift in the way clinical stem cell application providers function—from institutional embedment to strategic linking through collaborative networks. We ask why and how unauthorized clinical applications are sustained and promoted in India. We conclude that this is possible as a result of a number of factors: jurisdictional ambiguity, institutional inability, issues concerning the legal enforceability of the relevant guidelines, the complexity of the collaborative network structure that facilitates the circumvention of the regulation, and the nonfunctioning of apex-level committees

Guidelines for data management and scientific integrity in ethnography

New protocols for scientific integrity and data management issued by universities, journals, and transnational social science funding agencies are often modelled on medical or psychological research, and do not take account of the specific characteristics of the processes of ethnographic research. These guidelines provide ethnographers with some of the most basic principles of doing such research. They show that the primary response of ethnographers to requests to share research materials with third parties should be to remain aware of the fact that these research materials have been coproduced with their research participants; that the collaborative ethnographic research process resists turning these materials into commodified, impersonal ‘data’ that can be owned and shared publicly; and that therefore the primary response of ethnographers should be to retain custody of research materials

Genomics and genetic medicine: pathways to global health?

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