Medicalizing risk: How experts and consumers manage uncertainty in genetic health testing

PLoS One. 2022 Aug 4;17(8):e0270430. doi: 10.1371/journal.pone.0270430. eCollection 2022.

Abstract

Given increased prevalence of direct-to-consumer (DTC) genetic health tests in recent years, this paper delves into discourses among researchers at professional genomics conferences and lay DTC genetic test users on popular discussion website Reddit to understand the contested value of genetic knowledge and its direct implications for health management. Harnessing ethnographic observations at five conferences and a text -analysis of 52 Reddit threads, we find both experts and lay patient-consumers navigate their own versions of "productive uncertainty." Experts develop genetic technologies to legitimize unsettled genomics as medical knowledge and mobilize resources and products, while lay patient-consumers turn to Internet forums to gain clarity on knowledge gaps that help better manage their genetic risk states. By showing how the uncertain nature of genomics serves as a productive force placing both parties within a mutually cooperative cycle, we argue that experts and patient-consumers co-produce a form of relational medicalization that concretizes "risk" itself as a disease state.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Genetic Testing*
  • Genomics*
  • Humans
  • Prevalence
  • Uncertainty

Grants and funding

The authors (MM, SW, ME, ALM, AME) jointly applied for a research grant from UC Berkeley's Social Science Matrix. We were awarded the 'Matrix Prospecting Team Award' to carry out our proposed project. We used our entire grant amount to fund costs related to data collection and research assistants. There is no grant number associated with this award. The Matrix's website can be accessed at: https://matrix.berkeley.edu/. The funders had no role in the study design, data collection, data analysis, decision to publish, or preparation of the manuscript.