Abstract
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.
Highlights
In recent years, a number of policy documents have emphasized trust as a crucial element in the promotion of data sharing and international collaboration in research
If the trust is based on hope for something that will never come true, is it similar to what philosophers call ‘misplaced trust’ (Hardin 2004) or what Appelbaum (Appelbaum et al 1987) famously tagged ‘a therapeutic misconception’? Or does this portray a case of ‘undue influence’ (Lavery et al 2007)? Rather than employing these bioethical categories to define a particular breach by context-free international standards, we suggest a need to appreciate the specificity of how the terms of enrollment engage the ‘trusting’ parties’ sense of opportunity, deprivation and hope
In this paper we have problematized the tendency in policy documents to refer to trust as a particular ‘factor’ with a given effect on donations irrespective of context
Summary
A number of policy documents have emphasized trust as a crucial element in the promotion of data sharing and international collaboration in research (see, e.g., OECD 2014, 2016; OECD and GCOA 2015; European Commission 2016). The differences between these two setups run deeper than that, and though we are lead to think of trust as a ‘factor’ that operates in the same way across geographical spaces when reading policies of international data sharing, we argue that ‘trust’ should not be thought of as the name of a phenomenon characterizing willingness to donate. We propose to avoid searching for an understanding of what trust really means Instead we use these aforementioned insights to encircle a vocabulary (affective, rational, normative) to understand relationships in their specificity, what people invest in them and why.
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