Howard, J. orcid.org/0000-0001-7182-593X, Mazanderani, F. and Locock, L. (2021) Life ‘on high alert’: how do people with a family history of motor neurone disease make sense of genetic risk? insights from an online forum. Health, Risk & Society, 23 (5-6). pp. 179-195. ISSN 1369-8575
Abstract
It is estimated that up to ten per cent of people with motor neurone disease (MND) have an inherited form of the disease. Families with a history of inherited MND may face specific issues around managing the condition in relatives and adapting to life knowing that they too could develop the disease, which we refer to as living ‘at risk’. This qualitative study is based on a thematic analysis of posts from 37 threads shared on the MND Association Forum between 2010 and 2019. Through this analysis we explore how forum users make sense of, and negotiate, genetic risk in this online space. We unpack how risk is constructed through a tracing and reframing of family history in relation to MND; we draw out the different ways uncertainty is expressed by people living with the threat of the disease; and we outline how future decisions around genetic testing and reproductive choices play out on the forum. Genetic risk was articulated temporally, with posters reflecting on past, present and expected future experiences across posts. This was crosscut by profound uncertainty. How people understood and expressed experiences of living ‘at risk’ – and the responses they received from others – were grounded in different forms of experiential knowledge, intertwined with biomedical and genetic information. We propose the MND Association forum as an interactional site where uncertainties are negotiated and risk is made sense of by individuals with a family history of MND, alongside those affected by ‘sporadic’ forms of the disease.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
Keywords: | genetic risk; uncertainty; motor neurone disease; online forums; experiential knowledge |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Medicine and Population Health |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 03 Apr 2024 13:19 |
Last Modified: | 03 Apr 2024 13:19 |
Status: | Published |
Publisher: | Informa UK Limited |
Refereed: | Yes |
Identification Number: | 10.1080/13698575.2021.1946488 |
Sustainable Development Goals: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:210980 |