Boardman, Felicity K.. (2014) Knowledge is power? : the role of experiential knowledge in genetically 'risky' reproductive decisions. Sociology of Health & Illness, Volume 36 (Number 1). pp. 137-150. ISSN 1467-9566

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Abstract

Knowledge of the condition being tested for is increasingly acknowledged as an important factor in prenatal testing and screening decisions. An analysis of the way in which family members living with an inheritable condition use and value this knowledge has much to add to debates around whether and how this type of knowledge could be made available to prospective parents facing screening decisions. This paper reports on in-depth interviews with sixty-one people (conducted 2007-9), with a genetic condition in their family, Spinal Muscular Atrophy (SMA). Many participants described their intimate familial knowledge of SMA as offering them valuable insights with which they could imagine future lives. Other participants, however, found themselves trapped between their experiential knowledge of SMA and their (often) competing responsibility to maintain the wellbeing of their family. Still others established a ‘hierarchy’ of knowledge to rank the authenticity of different family member’s accounts of SMA in order to discredit, or justify, their decisions. This paper highlights the way in which experiential knowledge of the condition being tested for cannot be unproblematically assumed to be a useful resource in the context of prenatal testing and screening decisions, and may actually constrain reproductive decisions.

Item Type:	Journal Article
Subjects:	R Medicine > RG Gynecology and obstetrics
Divisions:	Faculty of Medicine > Warwick Medical School > Health Sciences Other > Learning and Development Centre
Library of Congress Subject Headings (LCSH):	Genetic screening -- Psychological aspects, Genetic disorders -- Psychological aspects, Spinal muscular atrophy -- Psychological aspects
Journal or Publication Title:	Sociology of Health & Illness
Publisher:	Blackwell Publishing
ISSN:	1467-9566
Date:	January 2014
Volume:	Volume 36
Number:	Number 1
Page Range:	pp. 137-150
Identification Number:	10.1111/1467-9566.12048
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Restricted or Subscription Access
Funder:	Foundation for the Sociology of Health and Illness
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URI:	http://wrap.warwick.ac.uk/id/eprint/52313

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