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Collecting Families

An Institutional Approach to Human Genetic Biobanking in Indonesia

Bibliographic Data

ID12835809
AuthorsMargaret Sleeboom-Faulkner (0000-0002-5342-8559, University of Sussex, corresponding author)
Year2007
Volume35
Issue4-5
Pages626-656
Publication date2007-01-01
Peer ReviewedYes
Open AccessNo
TypeARTICLE
VenueAsian journal of social science (JOURNAL)
Journal identifiersISSN: 1568-4849 • E-ISSN: 2212-3857
PublisherElsevier BV (PUBLISHER)
DOI10.1163/156853107x240440
OpenAlexW1981017634
LanguageEN
Citations received1
References cited1

This paper analyses the e-discourse surrounding the dream of a Dutch scientist, Dr X, to create a human genetic databank in Bandung, Indonesia. Not only did Dr X hope to fulfil his dream of placing Indonesia on the genetic world map, he also aspired to set up the largest biomedical research centre in Indonesia, using blood samples gathered from various laboratories, medical centres and the jungle. His most important project was to study genes for familial syndromes, such as cancers and forms of mental retardation, some of which are considered to be specific for certain ethnic groups in Indonesia. Much has been written on the targets of the Human Genome Diversity Project (HGDP), but the incentives for and motives of geneticists to set up biobanks are little understood. Many works have 'framed' scientists as imperialists, Orientalists, racists and positivists or hailed them as explorers of humanity, pioneers of science and saviours of mankind. By analyzing Dr X's e-letters to fellow scientists, academics and politicians, I claim that the validity of such theories depends on whether they sufficiently take into account the institutional embedding. An institutional approach to biobanking should incorporate an assessment of socioeconomic inequalities, both on an international and national level, public healthcare needs, research regulation, and differences in academic cultures from a comparative perspective

Asian studies · Biobank · Biology · Diversity (politics · Ethnic group · Humanity · Jungle · Perspective (graphical · Political science · Positivism · Scholarship · Social science · Sociology · Anthropology · Ethics in Clinical Research · Law · Race, Genetics, and Society · Ecology · Genetics

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

    Open Access•Margaret Sleeboom-Faulkner•Anthropology and Medicine•2018

  • The Human Genome Diversity Project

    Open Access•Jenny Reardon•Social Studies of Science•2001

Unique citing works1
Citations per year0,13
Citation span2018 - 2018 (1)
Citation velocityhistorical
Highly citedNo
Citation typesNeutral: 1

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