Perceptions of genetic discrimination among people at risk for Huntington's disease: a cross sectional survey

Bombard, Yvonne; Veenstra, Gerry; Friedman, Jan M.; Creighton, Susan; Currie, Lauren O.; Paulsen, Jane S.; Bottorff, Joan L.; Hayden, Michael R.

doi:10.1136/bmj.b2175

Cited by 104 publications

(89 citation statements)

References 40 publications

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“…Recent studies on the prevalence and extent of genetic discrimination have only described that people experience genetic discrimination based on family history. 19 Our findings may help to understand how the (initial) reactions to and concerns of genetic discrimination indicate concerns, not only from asymptomatic individuals but also from symptomatic individuals.…”

Section: Discussionmentioning

confidence: 83%

“…In contrast to the Huntington disease research, which was based in Canada, a country where there are no specific laws addressing the use of genetic information by insurers or employers, 19,20 our study situates the concerns of genetic discrimination in the context of the Netherlands, with existing protective legislation. The Dutch Medical Examination Act (MEA) 26 restricts private insurers and employers in requesting a genetic test and using genetic test results from individuals who want to obtain a civil employment contract, a pension or a life or disability insurance.…”

Section: Introductionmentioning

confidence: 81%

“…It also highlights the need to pay special attention to the types of experiences that limit the choices and options available to persons or families 'at-risk' . 19,32,33 These results suggest the need for further research into how experiences of indirect forms of discrimination may affect concerns relating to genetic discrimination.…”

Section: Discussionmentioning

confidence: 98%

“…[15][16][17][18] It documents numerous cases of genetic discrimination, the majority of which relate to the insurance industry and employment relations. In a recent Canadian study, Bombard et al 19,20 explored concerns and experiences of genetic discrimination among asymptomatic individuals in Huntington disease families based on family history and genetic test results, and reported that nearly 40% of the participants experienced genetic discrimination in the social sphere or in the domains of insurance or employment. Although limited evidence for genetic discrimination is gradually being collected, still little is known about the origins and backgrounds of fears of genetic discrimination and about how individuals react to (the risk of) genetic discrimination.…”

Section: Introductionmentioning

confidence: 99%

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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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Section: Discussionmentioning

confidence: 83%

Section: Introductionmentioning

confidence: 81%

Section: Discussionmentioning

confidence: 98%

Section: Introductionmentioning

confidence: 99%

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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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“…35 Arguably, issues of genetic discrimination play out quite differently for families with hereditary diseases than those in the general population using personalized genomic tests. Instead of concerns that insurers will use genetic information to impose high premiums and deny coverage or employment opportunities, as in the case of hereditary diseases, 36 patients may perceive themselves to be treated differently in their access to various treatments. 37 Indeed, as larger segments of the population are treated with personalized medicine tests and technologies, a different form of genetic discrimination may be introduced.…”

Section: Discussionmentioning

confidence: 99%

Citizens' perspectives on personalized medicine: a qualitative public deliberation study

et al. 2013

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Our objective was to explore citizens' informed and reasoned values and expectations of personalized medicine, a timely yet novel genomics policy issue. A qualitative, public deliberation study was undertaken using a citizens' reference panel on health technologies, established to provide input to the health technology assessment process in Ontario, Canada. The citizens' panel consisted of five women and nine men, aged 18-71 years, with one member selected from each health authority region. There were shared expectations among the citizens' panel members for the potential of personalized medicine technologies to improve care, provided they are deemed clinically valid and effective. These expectations were tempered by concerns about value for money and the possibility that access to treatment may be limited by personalized medicine tests used to stratify patients. Although they questioned the presumed technological imperative presented by personalized medicine technologies, they called for increased efforts to prepare the health-care system to effectively integrate these technologies. This study represents an early but important effort to explore public values toward personalized medicine. This study also provides evidence of the public's ability to form coherent judgments about a new policy issue. Concerned that personalized tests might be used to ration care, they suggested that treatment should be made available if patients wanted it, irrespective of tests that indicate little benefit. This issue raises clinical and policy challenges that may undermine the value of personalized medicine. Further efforts to deliberate with the public are warranted to inform effective, efficient and equitable translation of personalized medicine.

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Insurance and Genetic Information

Bombard¹,

Lemmens²

2010

Encyclopedia of Life Sciences

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With the accelerating pace of genetic technology comes increased opportunity for individuals to obtain additional risk estimates about their susceptibilities to disease. Insurers argue that they need to have access to any information that predicts disease risk because the amount that policyholders pay for insurance coverage is determined by assessing their level of risk. Without access to genetic information, insurers are concerned that individuals may purchase more insurance at unadjusted premiums, which may lead to the collapse of the market. However, people are reluctant to share genetic test results with insurers due to the potential risk of insurance discrimination. As genetic testing becomes more prevalent, there are concerns that sections of the population will be denied insurance because of their genetic profiles. The question of what governments should do about this is one that has been debated in many countries. Key concept: Despite the public's fear of insurance discrimination, insurers argue that genetic health information should be shared with them to enable underwriters to make an accurate assessment of the risk.

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Perceptions of genetic discrimination among people at risk for Huntington's disease: a cross sectional survey

Abstract: Objective To assess the nature and prevalence of genetic discrimination experienced by people at risk for Huntington's disease who had undergone genetic testing or remained untested.

Cited by 104 publications

References 40 publications

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

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

Citizens' perspectives on personalized medicine: a qualitative public deliberation study

Insurance and Genetic Information

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