Ethics and the Genome in the NICU: Stewardship from the Bedside Nurse

Abstract

Medical technology has rapidly decreased the time and cost required to sequence, visualize, and analyze an individual's genome since the Human Genome Project (HGP) ended in April of 2003. The resulting real-time implementation and expanded use of genetic testing in clinical practice, especially in the NICU, has often left ethicists playing catch-up and providing reactive guidance rather than proactive guidance, and nurses struggling to understand their role in resolving associated legal, ethical, and social concerns. This article provides proactive guidance concerning some of the common ethical issues that are manifest in the application of genomics in the NICU as well as practical resources for navigating these conversations with parents and families. Clinical scenarios illustrate key points of consideration for NICU nurses engaged with challenging issues related to genomics in the NICU.