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Ethical conundrums in pediatric genomics.

Seth J Rotz1, Eric Kodish1

  • 1Department of Pediatric Hematology, Oncology, and Blood and Marrow Transplantation, Cleveland Clinic Children's Hospital, Cleveland, OH.

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Genomic testing advances hematology but raises ethical issues in pediatrics. Addressing consent, incidental findings, and equitable access is crucial for patient care and research.

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Area of Science:

  • Genomics
  • Hematology
  • Bioethics

Background:

  • Genomic discoveries have enhanced understanding and treatment of hematologic diseases.
  • Decreasing costs have increased clinical genomic testing, introducing ethical challenges.

Purpose of the Study:

  • To review ethical concerns associated with genomic testing in pediatric hematology.
  • To explore solutions using case studies.

Main Methods:

  • Review of ethical considerations in pediatric genomic testing.
  • Illustrative case studies in pediatric hematology.

Main Results:

  • Informed consent, assent, and permission complexities in pediatric patients.
  • Management of incidental findings from broad genomic testing (whole-exome/genome sequencing).
  • Blurring lines between clinical care and research in precision medicine.

Conclusions:

  • Equitable access to genomic testing and utility assessment are vital.
  • Ethical frameworks are needed to navigate genomic testing in pediatric hematology.
  • Case-based discussions highlight the need for proactive solutions.