The expressivist objection to prenatal testing: The experiences of families living with genetic disease

Felicity Kate Boardman

doi:10.1016/j.socscimed.2014.02.025

Abstract

The expressivist objection to prenatal testing is acknowledged as a significant critique of prenatal testing practices most commonly advanced by disability rights supporters. Such writers argue that prenatal testing and selective termination practices are objectionable as they express disvalue not only of the foetus being tested, but also of disabled people as a whole, by focusing exclusively on the disabling trait. While the objection has been widely critiqued on the basis of its theoretical incoherence, this paper highlights the way in which it, nevertheless, is a significant mediator in decisions around the use of reproductive genetic technologies. By drawing on 41 in-depth qualitative interviews (drawn from a sample of 61) conducted in the UK between 2007 and 2009 with families and individuals living with a genetic disease, Spinal Muscular Atrophy (SMA), this paper highlights the ways in which expressivist objections feature prominently in the reproductive decisions of families living with SMA and the significant emotional burden they represent. While the literature on the expressivist objection has focused on the reproductive decisions of those undergoing prenatal testing for a condition of which they have little (or no) prior knowledge, the context of intimate familial relationships and extensive experience with the tested-for condition fundamentally alters the nature and impact of expressivist objections within families living with an inheritable condition. By focussing on the reproductive decisions of families living with SMA and their strategic management of the expressivist objection, this paper will address the call, made primarily by disability rights supporters, for ‘experientially based’ (as opposed to medical) information about the tested-for disability to be made available to would-be parents considering selective termination. It will be argued that parents' experiential knowledge of the tested-for disability can, in fact, amplify expressivist objections to prenatal testing, and thus paradoxically constrain, rather than facilitate, reproductive decisions.

Highlights

As the capacities of reproductive genetic technologies have expanded in recent years, so too have the number and nature of reproductive decisions facing would-be parents
Prenatal testing was described as a form of ‘genocide’ (Hannah, diagnosed with Type I Spinal Muscular Atrophy (SMA)) which communicated very clear disparaging messages about the value of people with SMA, while for others, expressivist concerns e though considered valid and relevant e were conceptualised as an unfortunate ‘by-product’ of processes that were ‘necessary’ in facilitating the reproductive decision-making of families living with SMA (Thomas, able-bodied sibling of Demi, diagnosed with Type II SMA)
This paper has presented some of the key ways in which the EO was experienced and negotiated within families living with SMA

Summary

Introduction

As the capacities of reproductive genetic technologies have expanded in recent years, so too have the number and nature of reproductive decisions facing would-be parents. The so-called ‘expressivist objection’ has been amongst such critiques of prenatal testing. The EO, as a critique of genetic testing practices, has been most often advanced by disability rights supporters Parens and Asch, 2000)

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Results

Conclusion