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Legal and Ethical Considerations in Allowing Parental Exemptions From Newborn Critical Congenital Heart Disease

Lisa A Hom1, Tomas J Silber1, Kathleen Ennis-Durstine1

  • 1a Children's National Heart Institute.

The American Journal of Bioethics : AJOB
|January 7, 2016
PubMed

Insights

Newborn screening for critical congenital heart disease (CCHD) is standard, but parents can opt-out for religious or personal reasons. Ethical considerations support honoring parental refusal for CCHD screening, prioritizing parental rights.

Area of Science:

  • Medical Ethics
  • Neonatal Screening
  • Public Health Policy

Background:

  • Critical congenital heart disease (CCHD) screening is now standard in the US, added to the Recommended Uniform Screening Panel (RUSP) in 2011.
  • Newborn screening generally does not require explicit parental consent, but most states permit religious or personal belief exemptions.

Purpose of the Study:

  • To explore the ethical considerations surrounding parental exemptions for CCHD screening.
  • To evaluate the balance between infant rights and parental autonomy in newborn screening decisions.

Main Methods:

  • Ethical analysis of legal precedents regarding religious exemptions.
  • Review of medical and ethical principles concerning infant rights and parental decision-making.

Main Results:

  • The study highlights the ethical complexities of parental refusal for CCHD screening based on deeply held beliefs.
  • It examines the legal framework for religious exemptions within the context of public health mandates.

Conclusions:

  • Despite the benefits of CCHD screening, parental decisions to refuse screening on religious or personal grounds should be respected.
  • The right to parental autonomy in healthcare decisions for newborns, particularly concerning CCHD screening, is a significant ethical consideration.

Keywords:
congenital heart diseasenewborn screeningreligious exemptions

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