Predictors of Genetic Testing Decisions: A Systematic Review and Critique of the Literature

Abstract

Genetic testing is increasingly available in medical settings and direct-to-consumer. However, the large and growing literature on genetic testing decisions is rife with conflicting findings, inconsistent methodology, and uneven attention across test types and across predictors of genetic testing decisions. Existing reviews of the literature draw broad conclusions but sacrifice nuanced analysis that with a closer look reveals far more inconsistency than homogeny across studies. The goals of this paper are to provide a systematic review of the empirical work on predictors of genetic testing decisions, highlight areas of consistency and inconsistency, and suggest productive directions for future research. We included all studies that provided quantitative analysis of subjective (e.g., perceived risk, perceived benefits of testing) and/or objective (e.g., family history, sociodemographic variables) predictors of genetic testing interest, intentions, or uptake, which produced a sample of 115 studies. From this review, we conclude that self-reported and test-related (as opposed to disorder-related or objective) predictors are relatively consistent across studies but that theoretically-driven efforts to examine testing interest across test types are sorely needed.

Highlighting the impact of cascade carrier testing in cystic fibrosis families

“…Even though uptake rates were different, the uptake predictors we found were consistent with those reported by the Australian team (with similar odds ratios) [18]. The fact that women are more inclined to make the test corroborates the gender effect found in other genetic disorders [26][27][28][29].…”

Public Views on Genetics and Genetic Testing: A Survey of the General Public in Belgium

“…Recent literature reviews have identified a large number of empirical studies on attitudes toward GT (Haga et al, 2013;Sweeny et al, 2014). Most of these studies focus on GT for specific medical conditions or particular demographic groups.…”

Can genetic research motivate parents to pursue genomic testing for children with autism spectrum disorder?

“…Because desire to help with research motivates intention to test for other genetic disorders, this may also be true for intention regarding genetic tests for ASD. Despite this trend among other conditions of desireof assist genetic research as being a motivator, cross-sectional studies have recommended that each test be properly assessed for its own factors of motivation and parameters that determine parents' perceptions of testing [39,40]. To date, no available quantitative studies have measured the intention to test an ASD-affected child as it is associated with desire to help with research or perspectives about research.…”