title: Perceived ambiguity as a barrier to intentions to learn genome sequencing results.
abstract: Many variants that could be returned from genome sequencing may be perceived as ambiguous-lacking reliability, credibility, or adequacy. Little is known about how perceived ambiguity influences thoughts about sequencing results. Participants (n = 494) in an NIH genome sequencing study completed a baseline survey before sequencing results were available. We examined how perceived ambiguity regarding sequencing results and individual differences in medical ambiguity aversion and tolerance for uncertainty were associated with cognitions and intentions concerning sequencing results. Perceiving sequencing results as more ambiguous was associated with less favorable cognitions about results and lower intentions to learn and share results. Among participants low in tolerance for uncertainty or optimism, greater perceived ambiguity was associated with lower intentions to learn results for non-medically actionable diseases; medical ambiguity aversion did not moderate any associations. Results are consistent with the phenomenon of "ambiguity aversion" and may influence whether people learn and communicate genomic information.
authors.affiliation: National Cancer Institute, 9609 Medical Center Drive, Bethesda, MD, 20892-9761, USA. Jennifer.taber@nih.gov.
authors.forename: Jennifer M
authors.identifier: http://orcid.org/0000-0003-3285-4871
authors.initials: JM
authors.lastname: Taber
authors.affiliation: National Cancer Institute, 9609 Medical Center Drive, Bethesda, MD, 20892-9761, USA.
authors.forename: William M P
authors.initials: WM
authors.lastname: Klein
authors.affiliation: National Cancer Institute, 9609 Medical Center Drive, Bethesda, MD, 20892-9761, USA.
authors.forename: Rebecca A
authors.initials: RA
authors.lastname: Ferrer
authors.affiliation: Maine Medical Center, Portland, ME, USA.
authors.forename: Paul K J
authors.initials: PK
authors.lastname: Han
authors.affiliation: National Human Genome Research Institute, Bethesda, MD, USA.
authors.forename: Katie L
authors.initials: KL
authors.lastname: Lewis
authors.affiliation: National Human Genome Research Institute, Bethesda, MD, USA.
authors.forename: Leslie G
authors.initials: LG
authors.lastname: Biesecker
authors.affiliation: National Human Genome Research Institute, Bethesda, MD, USA.
authors.forename: Barbara B
authors.initials: BB
authors.lastname: Biesecker
mesh_terms: D000339:Affect; D000368:Aged; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D015894:Genome, Human; D006801:Humans; D007206:Individuality; D033182:Intention; D007858:Learning; D008297:Male; D008875:Middle Aged; D000067656:Optimism; D010465:Perception; D015203:Reproducibility of Results; D014342:Truth Disclosure; D035501:Uncertainty
keywords: Ambiguity aversion; Genetic/genome testing; Optimism; Perceived ambiguity; Response efficacy; Tolerance for uncertainty