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

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.