Types of genetic determinism in direct-to-consumer genetic testing for health

Abstract

Prior research has challenged genetic determinism by highlighting the complex ways lay people engage with genetics. However, most of these critiques took place prior to the availability of direct-to-consumer (DTC) genetic health testing and were based on reactions to genetic testing administered in a clinical context due to either symptoms or family history. Today, many lay people interact with genetic health information outside of medicine, and often without pre-existing symptoms or family history. This suggests the need to revisit genetic determinism in the context of this new mode of public engagement with genetic information about health. In this paper we examine how a sample of 39 people who had previously taken a DTC genetic test for health make sense of their results. We find genetic determinism is prominent, but takes on several distinct forms, including protective determinism, motivating determinism, and absolute determinism. Considering this, we argue that genetic determinism should not be treated as a singular or fixed concept and cannot be dismissed as insignificant, given its continued salience for DTC genetic test-takers. Our analysis also pays particular attention to how test-takers interpret negative results (i.e., no elevated risks detected), as this is a common outcome of DTC genetic tests but has not been a focus of prior research.