Is Whole-Exome Sequencing an Ethically Disruptive Technology? Perspectives of Pediatric Oncologists and Parents of Pediatric Patients With Solid Tumors

Authors

Laurence B McCullough, Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas
Melody J Slashinski, Department of Community Health Education, University of Massachusetts at Amherst
Amy L McGuire, Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas
Richard L Street, Department of Communication, Texas A&M University, College Station, and Department of Medicine, Baylor College of Medicine, Houston, Texas
Christine M Eng, Department of Molecular and Human Genetics and Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas
Richard A Gibbs, Department of Molecular and Human Genetics and Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas
D William Parsons, Dept. of Molecular and Human Genetics, Human Genome Sequencing Center, and Dept. of Pediatrics, Baylor College of Medicine Houston, Texas
Sharon E Plon, Dept. of Molecular and Human Genetics, Human Genome Sequencing Center, and Dept. of Pediatrics, Baylor College of Medicine Houston, Texas

Publication Date

3-1-2016

Journal

Pediatric Blood & Cancer

DOI

10.1002/pbc.25815

PMID

26505993

PMCID

PMC4982513

PubMedCentral® Full Text Version

Author MSS

Published Open-Access

no

Keywords

Child, Ethics, Exome, Humans, Interview, Psychological effects, Medical oncology, Molecular Sequencing Data, Neoplasms, Patients, Physicians

Abstract

BACKGROUND: It has been anticipated that physician and parents will be ill prepared or unprepared for the clinical introduction of genome sequencing, making it ethically disruptive.

PROCEDURE: As a part of the Baylor Advancing Sequencing in Childhood Cancer Care study, we conducted semistructured interviews with 16 pediatric oncologists and 40 parents of pediatric patients with cancer prior to the return of sequencing results. We elicited expectations and attitudes concerning the impact of sequencing on clinical decision making, clinical utility, and treatment expectations from both groups. Using accepted methods of qualitative research to analyze interview transcripts, we completed a thematic analysis to provide inductive insights into their views of sequencing.

RESULTS: Our major findings reveal that neither pediatric oncologists nor parents anticipate sequencing to be an ethically disruptive technology, because they expect to be prepared to integrate sequencing results into their existing approaches to learning and using new clinical information for care. Pediatric oncologists do not expect sequencing results to be more complex than other diagnostic information and plan simply to incorporate these data into their evidence-based approach to clinical practice, although they were concerned about impact on parents. For parents, there is an urgency to protect their child's health and in this context they expect genomic information to better prepare them to participate in decisions about their child's care.

CONCLUSIONS: Our data do not support the concern that introducing genome sequencing into childhood cancer care will be ethically disruptive, that is, leave physicians or parents ill prepared or unprepared to make responsible decisions about patient care.