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“That is why I have trust”: unpacking what ‘trust’ means to participants in international genetic research in Pakistan and Denmark

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Trust features prominently in a number of policy
documents that have been issued in recent years to facilitate
data sharing and international collaboration in medical
research. However, it often remains unclear what is meant
by ‘trust’. By exploring a concrete international collaboration
between Denmark and Pakistan, we develop a way of
unpacking trust that shifts focus from what trust ‘is’ to what
people invest in relationships and what references to trust
do for them in these relationships. Based on interviews in
both Pakistan and Denmark with people who provide blood
samples and health data for the same laboratory, we find
that when participants discuss trust they are trying to shape
their relationship to researchers while simultaneously communicating
important hopes, fears and expectations. The
types of trust people talk about are never unconditional, but
involve awareness of uncertainties and risks. There are different
things at stake for people in different contexts, and
therefore it is not the same to trust researchers in Pakistan as
it is in Denmark, even when participants donate to the same
laboratory. We conclude that casual references to ‘trust’ in
policy documents risk glossing over important local differences
and contribute to a de-politicization of basic inequalities
in access to healthcare.
OriginalsprogEngelsk
TidsskriftMedicine, Health Care and Philosophy
Vol/bind21
Udgave nummer2
Sider (fra-til)169–179
Antal sider11
ISSN1386-7423
DOI
StatusUdgivet - 2018

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