ArticleEuropean journal of human genetics : EJHG2012
Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts.
Article in European journal of human genetics : EJHG, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
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Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Global trends on fears and concerns of genetic discrimination: a systematic literature review.Journal of human genetics · 2016Pooled it
- Implementing genetics clinic for hereditary cancer in resource-constrained settings: a narrative review.Journal of community genetics · 2025Review
- Cardiovascular genetic counselor decision making about discussing life insurance with patients.Journal of genetic counseling · 2025Article
- Exploring perceptions of genetic risk and the transmission of substance use disorders.Addiction science & clinical practice · 2024Article
- Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing.European journal of human genetics : EJHG · 2024Article
- Knowledge, awareness, and perception on genetic testing for primary immunodeficiency disease among parents in Malaysia: a qualitative study.Frontiers in immunology · 2023Article
- Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals.International journal of environmental research and public health · 2022Article
- Risk-Stratified Approach to Breast Cancer Screening in Canada: Women's Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data.Journal of personalized medicine · 2021Article
- Genetic discrimination: introducing the Asian perspective to the debate.NPJ genomic medicine · 2021Review
- Public attitudes towards the genetic testing in Georgia.Journal of community genetics · 2021Article
- Normalising life at risk of Huntington's disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination.European journal of human genetics : EJHG · 2021Article
- Study protocol: the Australian genetics and life insurance moratorium-monitoring the effectiveness and response (A-GLIMMER) project.BMC medical ethics · 2021Article
- Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA).Risk management and insurance review · 2021Article
- Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries.Nature medicine · 2019Review
- Ethical aspects of sudden cardiac arrest research using observational data: a narrative review.Critical care (London, England) · 2018Review
- 'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research.European journal of human genetics : EJHG · 2016Article
- Epigenome data release: a participant-centered approach to privacy protection.Genome biology · 2015Article
- Life insurance: genomic stratification and risk classification.European journal of human genetics : EJHG · 2014Article
- Incorporating genomics into breast and prostate cancer screening: assessing the implications.Genetics in medicine : official journal of the American College of Medical Genetics · 2013Review
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Since the 1990s, many countries in Europe and the United States have enacted genetic non-discrimination legislation to prevent people from deferring genetic tests for fear that insurers or employers would discriminate against them based on that information. Although evidence for genetic discrimination exists, little is known about the origins and backgrounds of fears of discrimination and how it affects decisions for uptake of genetic testing. The aim of this article is to gain a better understanding of these fears and its possible impact on the uptake of testing by studying the case of hypertrophic cardiomyopathy (HCM). In a qualitative study, we followed six Dutch extended families involved in genetic testing for HCM for three-and-a-half years. Semi-structured interviews were conducted with 57 members of these families. Based on the narratives of the families, we suggest that fears of discrimination have to be situated in the broader social and life-course context of family and kin. We describe the processes in which families developed meaningful interpretations of genetic discrimination and how these interpretations affected family members' decisions to undergo genetic testing. Our findings show that fears of genetic discrimination do not so much stem from the opportunity of genetic testing but much more from earlier experiences of discrimination of diseased family members. These results help identify the possible limitations of genetic non-discrimination regulations and provide direction to clinicians supporting their clients as they confront issues of genetic testing and genetic discrimination.
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Registered trials
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