title: Ethical considerations surrounding germline next-generation sequencing of children with cancer.
abstract: The advent of next-generation sequencing (NGS) has introduced an exciting new era in biomedical research. NGS forms the foundation of current genetic testing approaches, including targeted gene panel testing, as well as more comprehensive whole-exome and whole-genome sequencing. Together, these approaches promise to provide critical insights into the understanding of health and disease. However, with NGS testing come many ethical questions and concerns, particularly when testing involves children. These concerns are especially relevant for children with cancer, where the testing of tumor and germline tissues is increasingly being incorporated into clinical care. Areas covered: In this manuscript, we explore the key ethical considerations related to conducting germline NGS testing in pediatric oncology, focusing on the four main principles of beneficence, non-maleficence, autonomy and justice. Expert commentary: The ethical issues surrounding germline NGS testing are complex and result in part from our limited understanding of the medical relevance of many of the results obtained and poor knowledge of the impacts of testing, both beneficial and detrimental, on patients and their families. In this article we discuss the risks and benefits of germline NGS testing and the arguments for and against such testing in children with cancer.
authors.affiliation: a Section of Bioethics , St. Jude Children's Research Hospital , Memphis , TN , USA.
authors.forename: Liza-Marie
authors.initials: LM
authors.lastname: Johnson
authors.affiliation: b Division of Cancer Predisposition , St. Jude Children's Research Hospital , Memphis , TN , USA.
authors.forename: Kayla V
authors.initials: KV
authors.lastname: Hamilton
authors.affiliation: b Division of Cancer Predisposition , St. Jude Children's Research Hospital , Memphis , TN , USA.
authors.forename: Jessica M
authors.initials: JM
authors.lastname: Valdez
authors.affiliation: c Department of Pediatrics , University of Louisville , Louisville , KY , USA.
authors.forename: Esther
authors.initials: E
authors.lastname: Knapp
authors.affiliation: d Division of Quality of Life and Palliative Care , St. Jude Children's Research Hospital , Memphis , TN , USA.
authors.forename: Justin N
authors.initials: JN
authors.lastname: Baker
authors.affiliation: b Division of Cancer Predisposition , St. Jude Children's Research Hospital , Memphis , TN , USA.
authors.forename: Kim E
authors.initials: KE
authors.lastname: Nichols
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D004989:Ethics; D005260:Female; D018095:Germ-Line Mutation; D059014:High-Throughput Nucleotide Sequencing / Q000941:ethics* / Q000379:methods*; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000235:genetics*
keywords: Bioethics; cancer genomics; clinical genomics; pediatric oncology