Managing genetic discrimination: Strategies used by individuals found to have the Huntington disease mutation

Bombard, Yvonne; Penziner, Elizabeth; Decolongon, Joji; Klimek, Mary Lou; Creighton, Susan; Suchowersky, Oksana; Guttman, Mark; Paulsen, Jane S.; Bottorff, Joan L.; Hayden, Michael R.

doi:10.1111/j.1399-0004.2007.00770.x

Cited by 34 publications

(35 citation statements)

References 38 publications

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“…In brief, we selected and adapted questionnaire items on the basis of previous qualitative studies [Bombard et al, 2007, 2008; Penziner et al, 2008] and validated instruments [Krieger et al, 2005; Taylor et al, 2008]. The questionnaire was self-administered.…”

Section: Methodsmentioning

confidence: 99%

“…If participants responded “yes” to at least one situation, we classified them as having experienced discrimination. We described discrimination as being “unfairly prevented from doing something, or being treated unfairly,” based on the most common interpretation provided by participants in qualitative research that preceded survey development [Bombard et al, 2007, 2008; Penziner et al, 2008]. …”

Section: Methodsmentioning

confidence: 99%

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Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease

Bombard

Palin

Friedman

et al. 2010

American J of Med Genetics Pt B

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The purpose of this study was to identify factors that are associated with experiencing genetic discrimination (GD) among individuals at risk for Huntington disease (HD). Multivariable logistic regression analysis was used to examine factors associated with experiencing GD in data from a cross-sectional, self-report survey of 293 individuals at risk for HD. The study sample comprised 167 genetically tested respondents, and 66 who were not tested (80% response rate). Overall, individuals who learn they are at risk for HD at a younger age (OR = 3.1; 95% CI: 1.5–6.2; P = 0.002), are mutation-positive (OR = 2.8; 95% CI: 1.4–6.0; P = 0.006), or are highly educated (OR = 2.7; 95% CI: 1.4–5.1; P = 0.002) are more likely to experience GD, particularly in insurance, family, and social settings. Further, younger age was associated with discrimination in insurance (OR = 0.97; 95% CI: 0.94–1.00; P = 0.038). This study provides evidence that some people who are at risk for HD were more likely to experience GD than others. Individuals who learned they are at risk for HD at a younger age and those who are mutation-positive were more likely to experience GD, particularly in insurance, family, and social settings. Younger individuals were more likely to experience discrimination in the insurance setting. Overall, highly educated individuals were also more likely to report discrimination. These results provide direction for clinical and family discussions, counseling practice, and policy aimed at mitigating experiences of GD.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease

Bombard

Palin

Friedman

et al. 2010

American J of Med Genetics Pt B

View full text Add to dashboard Cite

show abstract

“…33 McAllister's theory of engagement and the engagement with GD theory proposed in this study both involve cognitive and emotional processes, which are precipitated by critical events (life events in relation to engagement with genetic risk, and awareness events in relation to engagement with GD). Likewise, the degree of engagement with cancer risk and GD influences approaches, reactions 33 as well as strategies 19 regarding one's risk for genetic risk or GD, respectively. The relationship between engagement with GD and risk perception is also similar to that described by McAllister (2003), with individuals' beliefs about carrier status being linked to their engagement with genetic risk.…”

Section: Discussionmentioning

confidence: 99%

“…Coupling the provision of information about GD with opportunities for clients to discuss concerns about and past experiences with GD is likely to be helpful in supporting the process of personalizing the factual information presented about GD and identifying strategies to minimize or manage the consequences of GD. 19 The framework of engagement with GD provides clinicians with a helpful tool to understand and contextualize clients' experiences and may help identify areas where more education and support is needed.…”

Section: Discussionmentioning

confidence: 99%

“…10,18 Strategies to manage the risk and experiences of GD have been described. 19 They included 'keeping low' (ie attempts to pass or carry on and keeping results private) as well as preempting, minimizing and confronting GD. These strategies varied depending on the form of the GD experience and the degree to which individuals engage with (or internalize) GD.…”

Section: Introductionmentioning

confidence: 99%

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Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease

et al. 2007

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It has been over 20 years since the inception of predictive testing for Huntington disease (HD), yet the social implications of knowing one's genetic risk for HD have not been fully explored. Genetic discrimination (GD) is a potential risk associated with predictive testing. Although anecdotal reports of GD have been documented, there is a paucity of research on the nature and experiences of GD in the context of HD. The purpose of this study was to describe the concerns and experiences of GD in the HD community. Semistructured interviews were conducted with 45 genetically tested and 10 untested individuals and analyzed using grounded theory methods. Our findings demonstrate that a majority of individuals were concerned about (37/55) and experienced GD (32/55) across a variety of contexts that extend beyond the traditionally examined contexts of insurance and employment to include family, social, government, and health-care domains. We describe a process of engagement with GD in which individuals formed meaningful interpretations of GD and personalized its risk and consequences in their lives. Our findings provide an insight into some of the specific processes and factors influencing engagement with GD. These results help identify areas where more education and support is needed and provide direction to genetic professionals supporting their clients as they confront issues of GD and genetic testing.

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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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Managing genetic discrimination: Strategies used by individuals found to have the Huntington disease mutation

Cited by 34 publications

References 38 publications

Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease

Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease

Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease

Insurance and Genetic Information

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