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


METHODS
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.
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
Laurence B
LB
McCullough
Department of Community Health Education, University of Massachusetts at Amherst, Amherst, Massachusetts.
Melody J
MJ
Slashinski
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
Amy L
AL
McGuire
Department of Communication, Texas A&M University, College Station, Texas.|Department of Medicine, Baylor College of Medicine, Houston, Texas.
Richard L
RL
Street
Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas.|Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas.
Christine M
CM
Eng
Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas.|Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas.
Richard A
RA
Gibbs
Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas.|Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas.|Department of Pediatrics, Baylor College of Medicine Houston, Texas.
D William
DW
Parsons
Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas.|Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas.|Department of Pediatrics, Baylor College of Medicine Houston, Texas.
Sharon E
SE
Plon
D002648:Child; D004992:Ethics, Medical; D059472:Exome; D006801:Humans; D007406:Interview, Psychological; D008495:Medical Oncology; D008969:Molecular Sequence Data; D009369:Neoplasms / Q000235:genetics*; D010361:Patients / Q000523:psychology; D010820:Physicians / Q000523:psychology
childhood cancers; disruptive technology; qualitative research; whole-exome sequencing