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

Abstract

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.

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Acknowledgements

We thank Robin Raesz-Martinez, study coordinator; Sarah Scollon and Katie Bergstrom, study genetic counselors; and Uma Ramamurthy and her team at the Baylor College of Medicine Institute for Clinical and Translational Research. We also appreciated Larry McCullough’s foundational contributions to this project. Finally, we offer particular gratitude to the oncologists and parents who participated in this study. The BASIC3 study is a Clinical Sequencing Exploratory Research (CSER) program project supported by the National Human Genome Research Institute and the National Cancer Institute (1U01HG006485).

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Correspondence to Janet Malek PhD.

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Disclosure

Baylor College of Medicine and Miraca Holdings Inc. have formed a joint venture with shared ownership and governance of the Baylor Genetics Laboratory, which performs exome sequencing. S.E.P. serves on the Scientific Advisory board of Baylor Genetics Laboratory. The other authors declare no conflicts of interest.

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Malek, J., Pereira, S., Robinson, J.O. et al. Responsibility, culpability, and parental views on genomic testing for seriously ill children. Genet Med 21, 2791–2797 (2019). https://doi.org/10.1038/s41436-019-0570-6

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Keywords

  • guilt
  • blame
  • responsibility
  • genomic sequencing
  • parent perspectives