Beyond "Good Governance": Trust, Consent, Exploitation and Vulnerability in Cross-Cultural Biobanking

Publikation: Bog/antologi/afhandling/rapportPh.d.-afhandlingForskning


This dissertation investigates ethical challenges met by biobanks operating across national and cultural borders. Building on an interview study with researchers and biobank donors in rural Pakistan, the dissertation engages with two much debated issues in medical and research ethics: 1. Informed consent is a moral cornerstone in medical practice and research, as a means to protect the autonomy of patients and research subjects. However, numerous studies from across the globe show that patients and research subjects do not base their decisions on the information they receive, but rather on their trust in the doctor or researcher. Is this type of decision-making morally wrong or less valuable? I discuss the value of trust in decision-making and consent in a medical context, and I argue that trust to at least the same degree as information can protect the autonomy of patients and research subjects. 2. Many ethical guidelines for medical research in developing countries focus on the issue of exploitation of research subjects: due to scarce resources and/or lack of education, individuals here are more likely to agree to participate in risky medical research, ultimately bringing them more harm than benefit. This line of reasoning is based on a certain conception of exploitation, which understands it as a function of the distribution of harms and benefits between researcher and research subject. Rooted in the Pakistan case, I demonstrate that such a conception of exploitation is inadequate, as it does not take into account the various contextual, social and cultural factors that may make individuals vulnerable to exploitation. I thus argue that the dominant conception of exploitation in research ethics in developing countries has the potential to overlook many actual instances of exploitation, and as a solution to this problem I put forth a suggestion for a more contextually sensitive conception of vulnerability in relation to exploitation.
ForlagDet Humanistiske Fakultet, Københavns Universitet
Antal sider109
StatusUdgivet - aug. 2017

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Ph.d. afhandling forsvaret 21. august 2017

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