Home | Databases | WorldLII | Search | Feedback Edited Legal Collections Data

Cecilie Halmsted Kongsholm, Nana --- "Exploitation and vulnerabilities in consent to biobank research in developing countries" [2019] ELECD 912; in Minssen, Timo; Herrmann, R Janne; Schovsbo, Jens (eds), "Global Genes, Local Concerns" (Edward Elgar Publishing, 2019) 156

Book Title: Global Genes, Local Concerns

Editor(s): Minssen, Timo; Herrmann, R Janne; Schovsbo, Jens

Publisher: Edward Elgar Publishing

Section: Chapter 9

Section Title: Exploitation and vulnerabilities in consent to biobank research in developing countries

Author(s): Cecilie Halmsted Kongsholm, Nana

Number of pages: 17

Abstract/Description:

Biobanks hold a great potential for research into a large number of health issues and developments - a potential that is magnified even more when biobanks collaborate internationally. To facilitate international collaboration and overcome issues of the often very different legal and regulative landscapes between countries, many efforts of harmonization of biobank guidelines - particularly with respect to the issue of consent to participation - have been launched. However, such efforts to harmonize guidelines risk overlooking or glossing over local factors that may compromise consent in specific contexts, particularly when research is conducted in developing countries, which risks enabling exploitative research interactions. In this chapter it is argued that harmonization efforts with a sole focus on consent may overlook two issues: (1) even when there is valid consent, there may still be exploitation; (2) in concrete research contexts in developing countries there may be local social and cultural factors that compromise individuals’ consent and make them particularly vulnerable to potentially exploitative research interactions. To illustrate, the author draws on findings from an interview study conducted with biobank donors in rural Pakistan, carried out under the Global Genes, Local Concerns project.