Author:Zainab Sheikh (University of Copenhagen)
Paper short abstract:
Based on interviews and participatory observation with donors and researchers in a project collecting genetic material in Pakistan and sending it to a laboratory in Copenhagen, I investigate the hopes, concerns and purposes involved in the making this international research infrastructure.
Paper long abstract:
Patients with autosomal recessive disorders, typically classified as 'rare diseases', are increasingly being sampled in Pakistan. This development has been ascribed to the growing interest in human molecular genetics in international research collaborations. However, the data created does not only serve the purpose of understanding the human genome through the disease. The international research infrastructure also facilitates the interest in understanding the disease through the human genome, by offering pre-marital and prenatal screening for Pakistani families, thus entering some of the most intimate aspects of lives lived in Pakistan. Based on interviews and participatory observation with donor families and researchers working with a project collecting genetic material on autosomal recessive disorders in Pakistan and sending it to a laboratory in Copenhagen, I investigate the different hopes, concerns and purposes attached to the data in order to arrive at an understanding of the pathways created and loops of feedback involved in the making of a new type of international research infrastructure.
From person to population and back: exploring accountability in public health