Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium
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 d...
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| Format: | Article |
| Language: | English |
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MDPI AG
2018-04-01
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| Series: | Laws |
| Subjects: | |
| Online Access: | http://www.mdpi.com/2075-471X/7/2/17 |
| _version_ | 1811306962525093888 |
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| author | Annet Wauters Ine Van Hoyweghen |
| author_facet | Annet Wauters Ine Van Hoyweghen |
| author_sort | Annet Wauters |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-13T08:55:00Z |
| format | Article |
| id | doaj.art-fb0b6e1254b24dd883d6477aa6351635 |
| institution | Directory Open Access Journal |
| issn | 2075-471X |
| language | English |
| last_indexed | 2024-04-13T08:55:00Z |
| publishDate | 2018-04-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Laws |
| spelling | doaj.art-fb0b6e1254b24dd883d6477aa63516352022-12-22T02:53:19ZengMDPI AGLaws2075-471X2018-04-01721710.3390/laws7020017laws7020017Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in BelgiumAnnet Wauters0Ine Van Hoyweghen1Centre for Sociological Research, Life Sciences & Society Lab, Parkstraat 45, box 3601, 3000 Leuven, BelgiumCentre for Sociological Research, Life Sciences & Society Lab, Parkstraat 45, box 3601, 3000 Leuven, BelgiumAlthough 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.http://www.mdpi.com/2075-471X/7/2/17genetic discriminationconcernsBRCAHuntington’s diseaseliving with genetic riskstigmaregulationqualitative researchEurope |
| spellingShingle | Annet Wauters Ine Van Hoyweghen Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium Laws genetic discrimination concerns BRCA Huntington’s disease living with genetic risk stigma regulation qualitative research Europe |
| title | Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium |
| title_full | Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium |
| title_fullStr | Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium |
| title_full_unstemmed | Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium |
| title_short | Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium |
| title_sort | concerns about genetic discrimination after regulation a qualitative study of the situation regarding brca and huntington s disease in belgium |
| topic | genetic discrimination concerns BRCA Huntington’s disease living with genetic risk stigma regulation qualitative research Europe |
| url | http://www.mdpi.com/2075-471X/7/2/17 |
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