ArticleEuropean journal of human genetics : EJHG2024
Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing.
Article in European journal of human genetics : EJHG, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 20 papers.
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The trial behind it
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Who cites it
20 citing papers in PubMed.
- A WeChat-Based Decision Aid Intervention to Promote Informed Decision-Making for Family Members Regarding the Genetic Testing of Patients With Colorectal Cancer: Randomized Controlled Trial.Journal of medical Internet research · 2025Trial
- Strengthening legal safeguards against genetic discrimination: review and recommendations for Malaysia.Journal of community genetics · 2026Review
- FH Genetic Testing in Preventive Cardiology: Unpacking Challenges and Enablers Beyond Cost.BMC health services research · 2026Article
- Enhancing the detection of familial hypercholesterolaemia in general practice: A model for supporting genetic cascade testing in the community.European journal of human genetics : EJHG · 2026Article
- Addressing genetic discrimination for stronger legal protections and enhanced public awareness.NPJ genomic medicine · 2025Article
- Cardiovascular genetic counselor decision making about discussing life insurance with patients.Journal of genetic counseling · 2025Article
- Barriers to clinical genetic testing in movement disorders.Current opinion in neurology · 2025Review
- The expanding global genomics landscape: Converging priorities from national genomics programs.American journal of human genetics · 2025Review
- Progress in Translating Glaucoma Genetics Into the Clinic: A Review.Clinical & experimental ophthalmology · 2025Review
- Looking back at 2024 in the European Journal of Human Genetics.European journal of human genetics : EJHG · 2025Article
- Societal views on using risk-based innovations to inform cancer screening and referral policies: findings from three community juries.BMC public health · 2025Article
- Challenges in Implementing Comprehensive Precision Medicine Screening for Ovarian Cancer.Current oncology (Toronto, Ont.) · 2024Review
- Genomics and insurance in the United Kingdom: increasing complexity and emerging challenges.Health economics, policy, and law · 2024Article
- "Uninsurable because of a genetic test": a qualitative study of consumer views about the use of genetic test results in Australian life insurance.European journal of human genetics : EJHG · 2024Article
- Future implications of polygenic risk scores for life insurance underwriting.NPJ genomic medicine · 2024Review
- Solving medical mysteries with genomics.European journal of human genetics : EJHG · 2024Article
- Future-proofing genomic data and consent management: a comprehensive review of technology innovations.GigaScience · 2024Review
- Impact of polygeNic risk score for glaucoma on psycHosocial ouTcomes (INSiGHT) study protocol.PloS one · 2024Article
- Direct notification by health professionals of relatives at-risk of genetic conditions (with patient consent): views of the Australian public.European journal of human genetics : EJHG · 2024Article
- Genetic Testing of Movements Disorders: A Review of Clinical Utility.Tremor and other hyperkinetic movements (New York, N.Y.) · 2024Review
Corrections and comments
- Erratum issued
Authors and funding
12 authors.
Funding
Abstract
Fears of genetic discrimination in life insurance continue to deter some Australians from genetic testing. In July 2019, the life insurance industry introduced a partial, self-regulated moratorium restricting the use of genetic results in underwriting, applicable to policies up to certain limits (eg AUD$500,000 for death cover).We administered an online survey to consumers who had taken, or been offered, clinical genetic testing for adult-onset conditions, to gather views and experiences about the moratorium and the use of genetic results in life insurance, including its regulation.Most respondents (n = 367) had undertaken a genetic test (89%), and had a positive test result (76%; n = 243/321). Almost 30% (n = 94/326) reported testing after 1 July 2019. Relatively few respondents reported knowing about the moratorium (16%; n = 54/340) or that use of genetic results in life insurance underwriting is legal (17%; n = 60/348). Only 4% (n = 14/350) consider this practice should be allowed. Some respondents reported ongoing difficulties accessing life insurance products, even after the moratorium. Further, discrimination concerns continue to affect some consumers' decision-making about having clinical testing and applying for life insurance products, despite the Moratorium being in place. Most respondents (88%; n = 298/340) support the introduction of legislation by the Australian government to regulate this issue.Despite the introduction of a partial moratorium in Australia, fears of genetic discrimination persist, and continue to deter people from genetic testing. Consumers overwhelmingly consider life insurers should not be allowed to use genetic results in underwriting, and that federal legislation is required to regulate this area.
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