Whose life is worth preserving? Disabled people and the expressivist objection to neonatology.

Felicity K. Boardman

doi:10.1111/apa.15336

Abstract

In an age of expansive genomic medicine, the findings of genetic sequencing techniques (whole genome/exome/mtDNA) are increasingly being factored into decisions about the treatment of critically ill neonates. Yet, such decisions remain highly ethically fraught (1). Neonatologists are generally familiar with the ethical complexity of such decisions, and the value judgements about 'worthwhile life' inherent within them. However, they are far less exposed to the views and life experiences of adults and families who currently live with genetic disabilities, many of whom live with the same conditions seen in neonatal intensive care, albeit in milder forms (e.g. SMA types II- IV). The insights of this group have much to offer an understanding of 'worthwhile life' in the context of treatment (and non-treatment) of critically ill babies, yet their voices are seldom heard within these debates.

Highlights

The data emerging from this study has produced a rich and varied picture of the views of this heterogeneous group
The theme of ambivalence has characterised their responses to genomic medicine and the futures for reproduction and genetic disease suggested by it
Expressivist objections would follow that a decision to allow an infant to die communicates an unequivocal negative appraisal of the value and quality of that child's life, which could logically be extended to the lives of others who share its condition

Summary

Introduction

The data emerging from this study has produced a rich and varied picture of the views of this heterogeneous group. For neonatologists who must make judgements about anticipated life quality for critically ill neonates, this social and personal framing is largely elusive.

Results

Conclusion