Pediatr Blood Cancer. 2015 Oct 27. doi: 10.1002/pbc.25815. [Epub ahead of print]

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

McCullough LB1, Slashinski MJ2, McGuire AL1, Street RL Jr3,4, Eng CM5,6, Gibbs RA5,6, Parsons DW5,6,7, Plon SE5,6,7.

Author information

• 1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
• 2Department of Community Health Education, University of Massachusetts at Amherst, Amherst, Massachusetts.
• 3Department of Communication, Texas A&M University, College Station, Texas.
• 4Department of Medicine, Baylor College of Medicine, Houston, Texas.
• 5Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas.
• 6Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas.
• 7Department of Pediatrics, Baylor College of Medicine Houston, Texas.

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.