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01.10.2015

Perceived ambiguity as a barrier to intentions to learn genome sequencing results

verfasst von: Jennifer M. Taber, William M. P. Klein, Rebecca A. Ferrer, Paul K. J. Han, Katie L. Lewis, Leslie G. Biesecker, Barbara B. Biesecker

Erschienen in: Journal of Behavioral Medicine | Ausgabe 5/2015

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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.

Different hypotheses concerning predictors of intentions to learn sequencing results in this sample have been tested and reported elsewhere. Other than intentions to receive and share sequencing results (Ferrer et al., 2014; Taber et al., 2015), the only measure currently included in other manuscripts is dispositional optimism, which was examined as a moderator of the effect of perceived risk on intentions to learn and use sequencing results (Taber et al., 2014). Descriptive statistics for the survey respondents are reported in Lewis et al., (2014) and Taber et al., (2014).

Log transformations were applied to normalize the distribution (for medically actionable intentions: original kurtosis = 2.72 and skew = −1.73, transformed kurtosis = −0.12 and skew = 1.11; for non-medically actionable intentions, original kurtosis = 2.07 and skew = −1.60; transformed kurtosis = −0.52 and skew = 0.92; for carrier status results: original kurtosis = 4.02 and skew = −1.92, transformed kurtosis = 0.07 and skew = 1.07).

Although paired t tests indicated that all five items assessing perceived ambiguity significantly differed from one another, qualitatively, participants on average reported greater endorsement that test results might be difficult to interpret (“I think scientists won’t be able to interpret much of my sequencing results,” M = 2.10, SD = 0.96; “It seems like my sequencing results will be interpreted in many different ways,” M = 2.92, SD = 0.95, and “I don’t think my sequencing results will give clear answers about my future health,” M = 2.69, SD = 0.93) than beliefs that results would not be trustworthy (M = 1.68, SD = 0.69) or accurate (M = 1.72, SD = 0.72). A subscale of only the former three items assessing interpretability had an unacceptable alpha of .641, and we therefore retained the 5-item scale with higher reliability (α = .743).

This interaction was further qualified by race (3-way interaction: β = 0.22, SE = 0.12, p = 0.045), such that optimism mitigated the effect of perceived ambiguity on intentions to learn results for non-medically actionable disease for White respondents, but not for respondents of other races.

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Titel: Perceived ambiguity as a barrier to intentions to learn genome sequencing results
verfasst von: Jennifer M. Taber
William M. P. Klein
Rebecca A. Ferrer
Paul K. J. Han
Katie L. Lewis
Leslie G. Biesecker
Barbara B. Biesecker
Publikationsdatum: 01.10.2015
Verlag: Springer US
Erschienen in: Journal of Behavioral Medicine / Ausgabe 5/2015
Print ISSN: 0160-7715
Elektronische ISSN: 1573-3521
DOI: https://doi.org/10.1007/s10865-015-9642-5

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