Perception, experience, and response to genetic discrimination in Huntington disease

The international RESPOND-HD study

Cheryl Erwin, Janet K. Williams, Andrew R. Juhl, Michelle Mengeling, James A. Mills, Yvonne Bombard, Michael R. Hayden, Kimberly Quaid, Ira Shoulson, Sandra Taylor, Jane S. Paulsen, William Adams, Mackenzie Elbert, Edmond Chiu, Anita Goh, Olga Yastrubetskaya, Abhijit Agarwal, Adam Rosenblatt, Claire Welsh, Karen Marder & 35 others Paula Wasserman, Carol Moskowitz, Joji Decolongon, Lynn A. Raymond, Hillary Lipe, Ali Samii, Pamela Williams, Elizabeth Aylward, Joan M. Harrison, Randi Jones, Cathy Wood-Siverio, Melissa Wesson, Kevin Biglan, Amy Chesire, Peter Como, Christine Giambattista, Mark Guttman, Alanna Sheinberg, Adam Singer, Jane Griffith, Elizabeth McCusker, Kylie Richardson, Terry Tempkin, Vicki L. Wheelock, Arik Johnson, Wendy Linderholm, Susan Perlman, Michael D. Geschwind, Jonathan Gooblar, Mira Guzijan, Phyllis Chua, Angela Komiti, Peter Panegyres, Elizabeth Vuletich, Mark Woodman

Research output: Contribution to journalArticle

32 Citations (Scopus)

Abstract

Genetic discrimination - defined as the denial of rights, privileges, or opportunities or other adverse treatment based solely on genetic information (including family history) - is an important concern to patients, healthcare professionals, lawmakers, and family members at risk for carrying a deleterious gene. Data from the United States, Canada, and Australia were collected from 433 individuals at risk for Huntington disease (HD) who have tested either positive or negative for the gene that causesHD and family members of affected individuals who have a 50% risk for developing the disorder but remain untested. Across all three countries, a total of 46.2% of respondents report genetic discrimination or stigma based on either their family history of HD or genetic testing for the HD gene mutation. We report on the overall incidence of discrimination and stigma in the domains of insurance (25.9%), employment (6.5%), relationships (32.9%), and other transactions (4.6%) in the United States, Canada, and Australia combined. The incidence of self-reported discrimination is less than the overall worry about the risk of discrimination, which is more prevalent in each domain. Despite a relatively low rate of perceived genetic discrimination in the areas of health insurance and employment, compared to the perception of discrimination and stigma in personal relationships, the cumulative burden of genetic discrimination across all domains of experience represents a challenge to those at risk for HD. The effect of this cumulative burden on daily life decisions remains unknown.

Original languageEnglish
Pages (from-to)1081-1093
Number of pages13
JournalAmerican Journal of Medical Genetics, Part B: Neuropsychiatric Genetics
Volume153
Issue number5
DOIs
StatePublished - 2010

Fingerprint

Huntington Disease
Canada
Genes
Discrimination (Psychology)
Incidence
Genetic Testing
Health Insurance
Insurance
Delivery of Health Care
Mutation

Keywords

  • Employment
  • Family history
  • Genetic testing
  • Insurance
  • Survey

ASJC Scopus subject areas

  • Genetics(clinical)
  • Psychiatry and Mental health
  • Cellular and Molecular Neuroscience
  • Medicine(all)

Cite this

Perception, experience, and response to genetic discrimination in Huntington disease : The international RESPOND-HD study. / Erwin, Cheryl; Williams, Janet K.; Juhl, Andrew R.; Mengeling, Michelle; Mills, James A.; Bombard, Yvonne; Hayden, Michael R.; Quaid, Kimberly; Shoulson, Ira; Taylor, Sandra; Paulsen, Jane S.; Adams, William; Elbert, Mackenzie; Chiu, Edmond; Goh, Anita; Yastrubetskaya, Olga; Agarwal, Abhijit; Rosenblatt, Adam; Welsh, Claire; Marder, Karen; Wasserman, Paula; Moskowitz, Carol; Decolongon, Joji; Raymond, Lynn A.; Lipe, Hillary; Samii, Ali; Williams, Pamela; Aylward, Elizabeth; Harrison, Joan M.; Jones, Randi; Wood-Siverio, Cathy; Wesson, Melissa; Biglan, Kevin; Chesire, Amy; Como, Peter; Giambattista, Christine; Guttman, Mark; Sheinberg, Alanna; Singer, Adam; Griffith, Jane; McCusker, Elizabeth; Richardson, Kylie; Tempkin, Terry; Wheelock, Vicki L.; Johnson, Arik; Linderholm, Wendy; Perlman, Susan; Geschwind, Michael D.; Gooblar, Jonathan; Guzijan, Mira; Chua, Phyllis; Komiti, Angela; Panegyres, Peter; Vuletich, Elizabeth; Woodman, Mark.

In: American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics, Vol. 153, No. 5, 2010, p. 1081-1093.

Research output: Contribution to journalArticle

Erwin, C, Williams, JK, Juhl, AR, Mengeling, M, Mills, JA, Bombard, Y, Hayden, MR, Quaid, K, Shoulson, I, Taylor, S, Paulsen, JS, Adams, W, Elbert, M, Chiu, E, Goh, A, Yastrubetskaya, O, Agarwal, A, Rosenblatt, A, Welsh, C, Marder, K, Wasserman, P, Moskowitz, C, Decolongon, J, Raymond, LA, Lipe, H, Samii, A, Williams, P, Aylward, E, Harrison, JM, Jones, R, Wood-Siverio, C, Wesson, M, Biglan, K, Chesire, A, Como, P, Giambattista, C, Guttman, M, Sheinberg, A, Singer, A, Griffith, J, McCusker, E, Richardson, K, Tempkin, T, Wheelock, VL, Johnson, A, Linderholm, W, Perlman, S, Geschwind, MD, Gooblar, J, Guzijan, M, Chua, P, Komiti, A, Panegyres, P, Vuletich, E & Woodman, M 2010, 'Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study', American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics, vol. 153, no. 5, pp. 1081-1093. https://doi.org/10.1002/ajmg.b.31079
Erwin, Cheryl ; Williams, Janet K. ; Juhl, Andrew R. ; Mengeling, Michelle ; Mills, James A. ; Bombard, Yvonne ; Hayden, Michael R. ; Quaid, Kimberly ; Shoulson, Ira ; Taylor, Sandra ; Paulsen, Jane S. ; Adams, William ; Elbert, Mackenzie ; Chiu, Edmond ; Goh, Anita ; Yastrubetskaya, Olga ; Agarwal, Abhijit ; Rosenblatt, Adam ; Welsh, Claire ; Marder, Karen ; Wasserman, Paula ; Moskowitz, Carol ; Decolongon, Joji ; Raymond, Lynn A. ; Lipe, Hillary ; Samii, Ali ; Williams, Pamela ; Aylward, Elizabeth ; Harrison, Joan M. ; Jones, Randi ; Wood-Siverio, Cathy ; Wesson, Melissa ; Biglan, Kevin ; Chesire, Amy ; Como, Peter ; Giambattista, Christine ; Guttman, Mark ; Sheinberg, Alanna ; Singer, Adam ; Griffith, Jane ; McCusker, Elizabeth ; Richardson, Kylie ; Tempkin, Terry ; Wheelock, Vicki L. ; Johnson, Arik ; Linderholm, Wendy ; Perlman, Susan ; Geschwind, Michael D. ; Gooblar, Jonathan ; Guzijan, Mira ; Chua, Phyllis ; Komiti, Angela ; Panegyres, Peter ; Vuletich, Elizabeth ; Woodman, Mark. / Perception, experience, and response to genetic discrimination in Huntington disease : The international RESPOND-HD study. In: American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics. 2010 ; Vol. 153, No. 5. pp. 1081-1093.
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