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Cancer Med. 2019 Jan 1. doi: 10.1002/cam4.1947. [Epub ahead of print]

Next-generation sequencing in precision oncology: Patient understanding and expectations.

Author information

1
Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan.
2
Center for Bioethics & Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, Michigan.
3
Rogel Cancer Center, University of Michigan Medical School, Ann Arbor, Michigan.
4
Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, Michigan.
5
Department of Pathology, University of Michigan Medical School, Ann Arbor, Michigan.
6
Michigan Center for Translational Pathology, University of Michigan Medical School, Ann Arbor, Michigan.
7
Department of Urology, University of Michigan Medical School, Ann Arbor, Michigan.
8
Howard Hughes Medical Institute, University of Michigan Medical School, Ann Arbor, Michigan.

Abstract

BACKGROUND:

Implementation of precision oncology interventions poses several challenges to informed consent and patient education. This study assessed cancer patients' understanding, expectations, and outcomes regarding participation in research examining the impact of matched tumor and germline sequencing on their clinical care.

METHODS:

A total of 297 patients (mean age: 59 years; 50% female; 96% white) with refractory, metastatic cancer were surveyed, including 217 who completed surveys both before and after undergoing integrated whole exome and transcriptome sequencing as part of a larger clinical research study.

RESULTS:

At baseline, the vast majority of patients expected to receive several potential direct benefits from study participation, including written reports of sequencing findings (88%), greater understanding of the causes of their cancer (74%), and participation in clinical trials for which sequencing results would make them eligible (84%). In most cases, these benefits were not realized by study completion. Despite explanations from study personnel to the contrary, most participants (67%-76%) presumed that incidental germline sequencing findings relevant to noncancerous health conditions (eg, diabetes) would automatically be disclosed to them. Patients reported low levels of concern about study risks at baseline and low levels of regret about study participation at follow-up.

CONCLUSIONS:

Findings suggest that cancer patients participating in precision oncology intervention research have largely unfulfilled expectations of direct benefits related to their study participation. Increased focus on patient education to supplement the informed consent process may help manage patients' expectations regarding the extent and likelihood of benefits received as a result of undergoing genomic sequencing.

KEYWORDS:

genome sequencing; informed consent; patient education; precision oncology

PMID:
30600607
DOI:
10.1002/cam4.1947
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