Genome sequencing in pediatrics: Ethical issues

  • Candice Cornelis
  • , Roel H.P. Wouters

Research output: Chapter in Book/Report/Conference proceedingChapterpeer-review

3 Citations (Scopus)

Abstract

The emergence of genomics, both in clinical care and research, raises a number of ethical questions. One of the key challenges is how to handle unsolicited or secondary findings. While the responsible management of unsolicited findings (UFs) remains a controversial and highly debated topic in adults, this challenge becomes increasingly complex in the case of children. In this chapter, potential conflicts between protecting the values of parents’ and children’s autonomy and their wellbeing are described and evaluated. It is argued that on a reasonable conception of how these values should be promoted, they may not necessarily be in conflict with one another. This insight is used to outline a set of proposals for addressing pediatric UFs in clinical practice.

Original languageEnglish
Title of host publicationClinical Genome Sequencing
Subtitle of host publicationPsychological Considerations
PublisherElsevier
Pages143-156
Number of pages14
ISBN (Electronic)9780128133354
ISBN (Print)9780128133361
DOIs
Publication statusPublished - 1 Jan 2019
Externally publishedYes

Keywords

  • Children
  • Genomic sequencing
  • Life prospects principle
  • Right to an open future
  • Unsolicited findings

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