Patients' perceived utility of whole-genome sequencing for their healthcare: findings from the MedSeq project

Philip J Lupo, Jill O Robinson, Pamela M Diamond, Leila Jamal, Heather E Danysh, Jennifer Blumenthal-Barby, Lisa Soleymani Lehmann, Jason L Vassy, Kurt D Christensen, Robert C Green, Amy L McGuire, MedSeq Project team, Philip J Lupo, Jill O Robinson, Pamela M Diamond, Leila Jamal, Heather E Danysh, Jennifer Blumenthal-Barby, Lisa Soleymani Lehmann, Jason L Vassy, Kurt D Christensen, Robert C Green, Amy L McGuire, MedSeq Project team

Abstract

Aim: To evaluate patients' expectations regarding the perceived utility of whole-genome sequencing (WGS).

Materials & methods: We used latent class analysis to characterize individuals enrolled in the MedSeq Project based on their perceived utility of WGS. Multinomial logistic regression was used to evaluate associations between participant characteristics and latent classes.

Results: Findings characterized participants into one of three perceived utility groups: enthusiasts, who had a high probability of agreement with all utility items (23%); health conscious, who perceived utility in medically related areas (60%) or skeptics, who had a low probability of agreement with utility items (17%). Trust significantly predicted latent class.

Conclusion: Understanding differences in perceived utility of WGS may inform strategies for uptake of this technology.

Keywords: clinical utility; patient perspectives; perceived utility; personal utility; whole-genome sequencing.

Conflict of interest statement

Financial & competing interests disclosure

The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Figures

Figure 1
Figure 1
Probability of agreement with utility items by perceived utility class.
Figure 2
Figure 2
Current and future utility of whole-genome sequencing by perceived utility class. WGS: Whole-genome sequencing.

Source: PubMed

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