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Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination

Abstract

Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination. This article adds to this existing body of literature by showing why people still worry about genetic discrimination and how they cope with these worries. Our findings derive from an analysis of semi-structured, in-depth interviews with individuals at risk for Huntington’s disease (HD) in Belgium. Concerns of genetic discrimination are grounded in the participants’ family backgrounds. Our participants, having witnessed numerous events in which symptomatic relatives suffered discrimination and stigmatisation, expressed heightened fears of facing genetic discrimination. Further, this article provides insight into the strategies participants use to cope with these fears. Two ways of normalising life were identified—while some persist in keeping their genetic risk a secret, other participants explicitly choose to be transparent about their genetic risk, desiring a level of openness. However, while they want to ‘break’ with their family background, participants who choose to be open are still held back by their worries about genetic discrimination by organisational actors. ‘Normalising genetics’ appears to be particularly challenging considering the remaining stereotypes and stigma surrounding genetic diseases.

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Notes

  1. 1.

    Article 58 and article 61 of the Belgian Law on Insurance (2014) are of relevance in the context of genetic discrimination. Article 58 of the Law states that the insured individual should disclose all information that could be considered relevant to the risk assessment of the insured. In addition, genetic information should not be disclosed by the insured person. Article 61 on medical investigations necessary to obtain an insurance contract, states that medical investigations cannot be based on genetic testing to determine future health status.

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Correspondence to Annet Wauters.

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The research for this article is part of and supported by the Odysseus project ‘Postgenomic Solidarity. European Life Insurance in the era of Personalised Medicine’, funded by the Research Foundation Flanders (FWO), grant number 3H140131.

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Wauters, A., Van Hoyweghen, I. Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination. Eur J Hum Genet (2021). https://doi.org/10.1038/s41431-021-00822-z

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