Psychological and Ethical Challenges of Introducing Whole Genome Sequencing into Routine Newborn Screening: Lessons Learned from Existing Newborn Screening

Research output: Contribution to journalArticlepeer-review

66 Downloads (Pure)

Abstract

As a psychologist and an ethicist, we have explored empirically newborn screening consent and communication processes. In this paper we consider the impact on families if newborn screening uses whole genome sequencing. We frame this within the World Health Organization's definition of health and contend that proposals to use whole genome sequencing in newborn screening take into account the ethical, practical and psychological impact of such screening. We argue that the important psychological processes occurring in the neonatal phase necessitate a clear justification that providing risk information at this stage provides a health benefit. We illustrate how research on current newborn screening can inform whole genome sequencing debates, whilst highlighting important gaps. Obtaining explicit, voluntary, and sufficiently informed consent for newborn screening is challenging, however we stress that such consent is ethically and legally appropriate and psychologically and practically important. We conclude by outling how this might be done.

Original languageEnglish
Pages (from-to)52-74
Number of pages23
JournalThe New Bioethics: A Multidisciplinary Journal of Biotechnology and the Body
Volume29
Issue number1
Early online date1 Oct 2022
DOIs
Publication statusPublished - 1 Oct 2022

Keywords

  • Newborn screening
  • communication
  • consent
  • ethics
  • psychological impact
  • whole genome
  • Informed Consent
  • Humans
  • Infant, Newborn
  • Communication
  • Neonatal Screening/psychology
  • Whole Genome Sequencing

Fingerprint

Dive into the research topics of 'Psychological and Ethical Challenges of Introducing Whole Genome Sequencing into Routine Newborn Screening: Lessons Learned from Existing Newborn Screening'. Together they form a unique fingerprint.

Cite this