Stigma, history, and Huntington's disease

Wexler, Alice

doi:10.1016/s0140-6736(10)60957-9

Cited by 42 publications

(30 citation statements)

References 2 publications

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“…The lack of knowledge of GINA was present among individuals affected by HD, who have historically either experienced or been at risk for genetic discrimination (10)(11)(12)(13)(14), and are a population that the legislation seeks to protect. Actual knowledge of key provisions and limitations of this civil rights legislation was even lower, with less than half of all individuals familiar with the legislation aware of its protection against genetic discrimination in health insurance, employment, and research, and less than 15% aware of its absence of protection in life insurance, long-term care insurance, and disability insurance.…”

Section: Discussionmentioning

confidence: 99%

“…Actual knowledge of key provisions and limitations of this civil rights legislation was even lower, with less than half of all individuals familiar with the legislation aware of its protection against genetic discrimination in health insurance, employment, and research, and less than 15% aware of its absence of protection in life insurance, long-term care insurance, and disability insurance. The lack of knowledge of GINA was present among individuals affected by HD, who have historically either experienced or been at risk for genetic discrimination (10)(11)(12)(13)(14), and are a population that the legislation seeks to protect. Those who are pre-symptomatic for HD may be more familiar with genetic discrimination and GINA by virtue of having had genetic testing, and likely, genetic counseling.…”

Section: Discussionmentioning

confidence: 99%

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Knowledge of the Genetic Information Nondiscrimination act among individuals affected by Huntington disease

et al. 2012

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The Genetic Information Nondiscrimination Act (GINA) of 2008 was the first US legislation to address genetic discrimination. We sought to assess understanding of GINA among individuals affected by the autosomal dominant condition, Huntington disease (HD). We conducted a cross-sectional survey of individuals with varying risk of HD to assess their familiarity with GINA. As a control, individuals were surveyed about their familiarity with the Health Insurance Portability and Accountability Act (HIPAA). Those who reported familiarity with GINA were asked about their knowledge of specific provisions of the legislation. The survey was offered to 776 participants and completed by 410 (response rate 53%). Respondents across all groups were less familiar with GINA (41% slightly, somewhat, or very familiar) than with HIPAA (65%; p < 0.0001). Of individuals with or at risk for HD who reported some familiarity with GINA, less than half correctly identified GINA's protections, and less than 15% correctly identified its limitations. Thus, among individuals affected by HD, familiarity with and knowledge of GINA are low. The effectiveness of the legislation may be limited by this lack of knowledge.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Knowledge of the Genetic Information Nondiscrimination act among individuals affected by Huntington disease

et al. 2012

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“…Historically Huntington's disease was stigmatised with compulsory sterilisation advocated in the US and in Germany (Wexler, 2010). Although the focus has now changed, it is conceivable that the stigma remains in some communities.…”

Section: Discussionmentioning

confidence: 99%

Reaching the ‘hard to reach’: strategies to recruit black and minority ethnic service users with rare long-term neurological conditions

Hoppitt

Shah

Bradburn

et al. 2012

International Journal of Social Research Methodology

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“…In the United States, Charles Davenport was one of the first individuals to draw up pedigrees and conduct largescale genetic studies of HD families. In 1910, he founded the U.S. Eugenics Record Office at Cold Spring Harbor (50,51 Huntington's disease symptoms are obvious. Most people are easy to spot.…”

Section: Understanding the Past To Change The Futurementioning

confidence: 99%

Huntington's Disease: Advocacy Driving Science

Wexler

2012

Annu. Rev. Med.

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My mother, Leonore, was diagnosed with Huntington's disease (HD) in 1968 at age 53. I was 23, my sister Alice 26, and our father, Milton Wexler, 60 years old. The same year, our father created the Hereditary Disease Foundation (HDF), dedicated to finding treatments and cures for HD. HD is an autosomal dominant, neurodegenerative disorder. Alice and I each have a 50% chance of inheriting and dying from the disorder. Over the past 43 years, we have been proud to change the face of science. Through Milton Wexler Interdisciplinary Workshops, judicious funding, and focusing on innovation and creativity, the HDF is an integral partner in key discoveries. The HDF recruited and supported >100 scientists worldwide who worked together as the Huntington's Disease Collaborative Research Group in a successful ten-year search for the HD gene. We found a DNA marker for the HD gene in 1983-the first marker to be found when the chromosomal location was unknown. We isolated the HD gene itself a decade later. These breakthroughs helped launch the Human Genome Project. We supported creating the first mouse model of HD and many other model systems. Currently, we focus on gene silencing, among other approaches, to create new treatments and cures.

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Stigma, history, and Huntington's disease

Cited by 42 publications

References 2 publications

Knowledge of the Genetic Information Nondiscrimination act among individuals affected by Huntington disease

Knowledge of the Genetic Information Nondiscrimination act among individuals affected by Huntington disease

Reaching the ‘hard to reach’: strategies to recruit black and minority ethnic service users with rare long-term neurological conditions

Huntington's Disease: Advocacy Driving Science

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