Knowledge Is Power: Benefits, Risks, Hopes, and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with Cancer

Title

Knowledge Is Power: Benefits, Risks, Hopes, and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with Cancer

Creator

Mandrell BN; Gattuso JS; Pritchard M; Caples M; Howard Sharp KM; Harrison L; Ouma AA; Valdez JM; Johnson LM; Nichols KE

Publisher

Seminars in Oncology Nursing

Date

2021

Subject

Decision Making; Genomic sequencing; Parent perspectives; Pediatric oncology

Description

Objectives To qualitatively describe parent perspectives of next-generation genomic sequencing (NGS) for their children with cancer, including perceived benefits, risks, hopes/expectations, and decision-making process when consenting or not consenting to NGS and prior to result disclosure. Data Sources Qualitative interviews were used. Conclusion Altruism is an important factor in parents consenting to NGS testing, as well as making sense of their child's cancer and legacy building. Parents described realistic hopes and expectations associated with NGS participation. Although parents endorsed the likelihood of no medical benefit, those consenting to NGS felt there was no reason not to participate. Parents declining participation expressed avoidance of worry and parent guilt if a germline variant were to be disclosed. Implications for Nursing Practice As NGS evolves into a component of the routine diagnostic workup for pediatric cancer patients, genetic nurses play a role in conducting informed consent conversations and ensuring that patients and families have realistic hopes and expectations associated with NGS.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

Special Edition #1 2022 List

Citation

Mandrell BN; Gattuso JS; Pritchard M; Caples M; Howard Sharp KM; Harrison L; Ouma AA; Valdez JM; Johnson LM; Nichols KE, “Knowledge Is Power: Benefits, Risks, Hopes, and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with Cancer,” Pediatric Palliative Care Library, accessed July 3, 2022, https://pedpalascnetlibrary.omeka.net/items/show/17871.

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