Boardman, Felicity K. (2014) The expressivist objection to prenatal testing : the experiences of families living with genetic disease. Social Science & Medicine, Volume 107 . pp. 18-25. doi:10.1016/j.socscimed.2014.02.025

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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.

Item Type:	Journal Article
Subjects:	R Medicine > RG Gynecology and obstetrics
Divisions:	Faculty of Medicine > Warwick Medical School > Health Sciences Faculty of Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH):	Abortion -- Moral and ethical aspects, Women's rights, Reproductive rights, Spinal muscular atrophy, Fetus -- Diseases
Journal or Publication Title:	Social Science & Medicine
Publisher:	Elsevier
ISSN:	0277-9536
Official Date:	April 2014
Dates:	Date Event April 2014 Published 14 February 2014 Available 13 February 2014 Accepted 10 February 2013 Modified 17 April 2013 Submitted
Volume:	Volume 107
Number of Pages:	8
Page Range:	pp. 18-25
DOI:	10.1016/j.socscimed.2014.02.025
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access
Funder:	Economic and Social Research Council (Great Britain) (ESRC), Foundation for the Sociology of Health and Illness
Grant number:	PTA-031-2005-00137

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