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Per Med. 2016 Jan 1;13(1):13-20. Epub 2016 Jan 8.

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

Author information

1
Department of Pediatrics, Section of Hematology-Oncology, Baylor College of Medicine, Houston, TX 77030, USA.
2
Center for Medical Ethics & Health Policy, Baylor College of Medicine, Houston, TX 77030, USA.
3
Division of Health Promotion & Behavioral Sciences, University of Texas School of Public Health, Houston, TX 77030, USA.
4
Harvard Medical School, Boston, MA 02115, USA; Division of General Medicine & Primary Care, Department of Medicine, Brigham & Women's Hospital, Boston, MA 20115, USA.
5
Harvard Medical School, Boston, MA 02115, USA; Division of General Medicine & Primary Care, Department of Medicine, Brigham & Women's Hospital, Boston, MA 20115, USA; Section of General Internal Medicine, VA Boston Healthcare System, Boston, MA 02130, USA.
6
Harvard Medical School, Boston, MA 02115, USA; Division of Genetics, Department of Medicine, Brigham & Women's Hospital, Boston, MA 02115, USA.

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

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