Responsibility, culpability, and parental views on genomic testing for seriously ill children

Genet Med. 2019 Dec;21(12):2791-2797. doi: 10.1038/s41436-019-0570-6. Epub 2019 Jun 12.


Purpose: We describe parental perceptions of and experiences with genomic sequencing (GS) in the care of seriously ill children. Understanding parents' perspectives is vital for clinicians caring for children, given the uptake of genomic technologies into clinical practice.

Methods: Longitudinal, semistructured interviews were conducted with parents of pediatric cancer patients who underwent exome sequencing (ES) as a part of the BASIC3 study. Interviews were conducted at baseline, one to eight months after results disclosure, and approximately one year after disclosure. Using thematic qualitative analysis, parent interviews were coded with both inductive and deductive approaches.

Results: Before receiving genomic information, parents indicated that they saw ES as something responsible parents would agree to if their child had cancer. Some parents talked about the possibility of sequencing affecting feelings of culpability for their child's cancer, worrying that they passed on a cancer-causing gene or made parenting decisions that caused the disease. However, after receiving their child's ES results many reported feeling relieved of guilt and worry, and felt they had fulfilled parental duties by agreeing to ES for their child.

Conclusion: These results reveal a layer of meaning that parents associate with GS that may inform clinicians' approach to care.

Keywords: blame; genomic sequencing; guilt; parent perspectives; responsibility.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Decision Making / ethics
  • Disclosure / ethics
  • Female
  • Genetic Testing / ethics*
  • Genomics
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Longitudinal Studies
  • Male
  • Neoplasms / genetics
  • Parenting / psychology*
  • Parents / psychology*
  • Sequence Analysis
  • Social Behavior
  • Social Responsibility