Collecting families: an institutional approach to human genetic biobanking in Indonesia

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.