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Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium

Centre for Sociological Research, Life Sciences & Society Lab, Parkstraat 45, box 3601, 3000 Leuven, Belgium
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Received: 2 February 2018 / Revised: 14 April 2018 / Accepted: 20 April 2018 / Published: 26 April 2018
(This article belongs to the Special Issue Genetic Discrimination and the Law)
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Abstract

Although there is no unequivocal evidence of genetic discrimination (GD), and despite laws that prohibit it, individuals confronted with genetic diseases still seem to be concerned. The aim of this study was to gain in-depth understanding of experiences and concerns in relation to possible genetic discrimination. This article presents an analysis of semi-structured interviews with 42 individuals who had or were at risk of breast and ovarian cancer (BRCA) or Huntington’s disease (HD) in Belgium. Even after regulation, individuals at risk of BRCA and HD express concerns about possible genetic discrimination. These concerns relate to direct forms of GD, for instance those related to insurance and employment. Individuals were often unclear about and wary of legislation. Importantly, concerns were also expressed as to more subtle and indirect forms of GD, e.g., in social relations, where individuals fear being treated ‘differently’ and unfairly. Our study demonstrates how these concerns emerge at particular moments in life and how levels and forms of concern are influenced by the specific genetic disorder. Worries concerning these more subtle forms of genetic discrimination are more difficult to protect by law. Current legislative efforts do not appear to be effective in alleviating concerns about genetic discrimination. These regulations seem to be unclear, some participants are unsure about their effectiveness and they do not succeed in incorporating all forms of genetic discrimination. Particularly challenging is how to address indirect forms of genetic discrimination. View Full-Text
Keywords: genetic discrimination; concerns; BRCA; Huntington’s disease; living with genetic risk; stigma; regulation; qualitative research; Europe genetic discrimination; concerns; BRCA; Huntington’s disease; living with genetic risk; stigma; regulation; qualitative research; Europe
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited (CC BY 4.0).
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Wauters, A.; Van Hoyweghen, I. Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium. Laws 2018, 7, 17.

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