Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom

Low, Lawrence K.; King, Suzanne; Wilkie, Tom

doi:10.1136/bmj.317.7173.1632

Cited by 105 publications

(61 citation statements)

References 5 publications

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“…In addition, chronic patients who perceived low knowledge were often indecisive about genetic testing [9]. The main worries of chronic patients concerned the consequences of genetic testing for insurance or finding a job [12,14,35], a realistic concern because as individuals with a genetic disorder in the Netherlands and the United Kingdom have more trouble getting insurance [25,36]. Furthermore, higher levels of perceived genetic knowledge were associated with a more favourable attitude towards genetic testing, but not with reserved attitudes.…”

Section: Discussionmentioning

confidence: 99%

“…Items were selected to cover major issues in relevant literature, and included medical aspects of genetic testing, the pros and cons of testing, and the consequences for relatives, daily life, insurance, and job opportunities [12,25]. Perceived knowledge of genetics was measured with 11 items (see Table 2) for which respondents indicated their own level of knowledge (1 = nothing; 2 = a little, but not sufficient; 3 = sufficient).…”

Section: Questionnairementioning

confidence: 99%

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Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease

Morren

Rijken

Baanders

et al. 2007

Patient Education and Counseling

111

163

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Objective: Genetics increasingly permeate everyday medicine. When patients want to make informed decisions about genetic testing, they require genetic knowledge. This study examined the genetic knowledge and attitudes of patients with chronic diseases, and the relationship between both. In addition, patients were asked about their preferred source of genetic information. Methods: Questionnaires were mailed to participants of a nationwide representative sample of patients with chronic diseases in the Netherlands (n = 1916). Results: The response rate was 82% (n = 1496). Perceived genetic knowledge was low, particularly among older and lower educated patients. Attitudes towards genetics were rather positive, especially among younger and higher educated patients. Some concerns were also documented, mainly about the consequences of genetic testing for employment and taking insurance. Patients who perceived to have little knowledge found it difficult to formulate an opinion about genetic testing. Higher levels of genetic knowledge were associated with a more favourable attitude towards genetics. Chronic patients prefer to receive genetic information from their GP. Conclusion: Chronic patients are ill prepared when they require genetic knowledge to make decisions regarding the treatment of their disease. This seems to result from a knowledge deficiency rather than from disagreement with the genetic developments. Practice implications: When chronic patients are in need of information about genetics or genetic testing, their general practitioner should provide this. #

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Section: Discussionmentioning

confidence: 99%

Section: Questionnairementioning

confidence: 99%

Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease

Morren

Rijken

Baanders

et al. 2007

Patient Education and Counseling

111

163

View full text Add to dashboard Cite

show abstract

“…Reports of genetic discrimination have been criticized for being anecdotal, 9 and allegations of discrimination have usually been based on the presence of disease in contrast to genetic predisposition. 2,[10][11][12][13][14] The most comprehensive study of genetic discrimination in asymptomatic individuals has been completed in Australia. [15][16][17][18] It documents numerous cases of genetic discrimination, the majority of which relate to the insurance industry and employment relations.…”

Section: Introductionmentioning

confidence: 99%

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

et al. 2012

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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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“…Such an approach may also be applied to other treatable genetic conditions in which patient concerns about insurance discourage being tested. 17,18 Whether the Dutch approach can be extrapolated to other countries, however, also depends, to some extent on country-specific legislation regarding genetic tests. 19,20 If our findings are communicated to individuals from families harbouring an FH mutation, this may reduce the perception of discrimination based on genetic FH.…”

Section: Discussionmentioning

confidence: 99%

Improved access to life insurance after genetic diagnosis of familial hypercholesterolaemia: cross-sectional postal questionnaire study

et al. 2012

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A decade ago, in the initial stage of genetic testing for familial hypercholesterolaemia (FH) in The Netherlands, it was reported that such screening decreased access to affordable life insurance for mutation carriers. In 2003, in order to improve access to insurance for FH mutation carriers, insurers agreed to underwrite according to a set of guidelines. In this cross-sectional study, we assessed whether access to insurance has improved since the advent of these guidelines. We approached 2825 subjects that had participated in the genetic testing for FH between 1998 and 2003. We compared unconditional acceptance rates before and after FH diagnosis and before and after the guidelines were issued by means of logistic regression analysis. Our study outcome pertains to 414 FH patients who applied for life insurance. Unconditional acceptance of a policy before DNA diagnosis and before the issue of guidelines occurred in 182 out of 255 (71%) cases, versus 27 out of 35 (77%) cases after DNA diagnosis, but before the issue of guidelines. De facto, 107 out of 124 (86%) patients received unconditional acceptance after DNA diagnosis and after the issue of guidelines (P for trend¼0.002). Access to life insurance improved for FH patients after molecular diagnosis and it improved even further after the guidelines were issued. Therefore, we argue that limited access to life insurance on the basis of 'DNA discrimination' is no longer a valid argument against genetic cascade testing for FH, at least not in our country.

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Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom

Cited by 105 publications

References 5 publications

Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease

Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

Improved access to life insurance after genetic diagnosis of familial hypercholesterolaemia: cross-sectional postal questionnaire study

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