The relationship between uncertainty and trust in genomic medicine and research: A literature review and thematic analysis

Abstract

The concepts of uncertainty and trust in genomic research and clinical care have not been consistently defined across studies, leading to varied claims about the relationship between them. The role that social groups play in this relationship is also therefore unclear. A categorisation of themes of trust and uncertainty will help to clarify and compare research claims. A review was conducted of peer-reviewed literature that discussed both ‘trust’ and ‘uncertainty’ in genomics research and/or medicine from 1 January 2018 to 28 June 2024. Exclusion criteria removed studies that did not focus on human genomics, and did not mention ‘trust’ or ‘uncertainty’. Discussions of ‘trust’, ‘uncertainty’ and ‘social groups’ were coded into distinct categories. The search returned 1070 unique abstracts from which 26 studies passed the exclusion criteria. Sixteen distinct uses of ‘trust’ and fifteen uses of ‘uncertainty’ were identified alongside sixteen social groups. Relationships between uncertainty and trust were often described as being mediated by a third variable. Irreducible forms of uncertainty reported in studies suggest a need to move towards assisting patients and data donors understand and feel comfortable with uncertainty and make use of ‘productive uncertainties’ to foster trust. More research is needed to understand how social group belonging may shape the relationship between trust and uncertainty.