In their own words

Reports of stigma and genetic discrimination by people at risk for huntington disease in the international RESPOND-HD study

Janet K. Williams, Cheryl Erwin, Andrew R. Juhl, Michelle Mengeling, 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, Paula Wasserman & 34 others 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

24 Citations (Scopus)

Abstract

Genetic discrimination may be experienced in the day-to-day lives of people at risk for Huntington disease (HD), encompassing occurrences in the workplace, when seeking insurance, within social relationships, and during other daily encounters. At -risk individuals who have tested either positive or negative for the genetic expansion that causes HD, as well as at-risk persons with a 50% chance for developing the disorder but have not had DNA testing completed the International RESPOND-HD (I-RESPOND-HD) survey. One of the study's purposes was to examine perceptions of genetic stigmatization and discrimination. A total of 412 out of 433 participants provided narrative comments, and 191 provided related codable narrative data. The core theme, Information Control, refers to organizational policies and interpersonal actions. This theme was found in narrative comments describing genetic discrimination perceptions across employment, insurance, social, and other situations. These reports were elaborated with five themes: What They Encountered, What They Felt, What Others Did, What They Did, and What Happened. Although many perceptions were coded as hurtful, this was not true in all instances. Findings document that reports of genetic discrimination are highly individual, and both policy as well as interpersonal factors contribute to the outcome of potentially discriminating events.

Original languageEnglish
Pages (from-to)1150-1159
Number of pages10
JournalAmerican Journal of Medical Genetics, Part B: Neuropsychiatric Genetics
Volume153
Issue number6
DOIs
StatePublished - Sep 2010

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Huntington Disease
Social Security
Organizational Policy
Stereotyping
Workplace
DNA

Keywords

  • Employment discrimination
  • Family
  • Insurance discrimination
  • Qualitative research

ASJC Scopus subject areas

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

Cite this

In their own words : Reports of stigma and genetic discrimination by people at risk for huntington disease in the international RESPOND-HD study. / Williams, Janet K.; Erwin, Cheryl; Juhl, Andrew R.; Mengeling, Michelle; 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. 6, 09.2010, p. 1150-1159.

Research output: Contribution to journalArticle

Williams, JK, Erwin, C, Juhl, AR, Mengeling, M, 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, 'In their own words: Reports of stigma and genetic discrimination by people at risk for huntington disease in the international RESPOND-HD study', American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics, vol. 153, no. 6, pp. 1150-1159. https://doi.org/10.1002/ajmg.b.31080
Williams, Janet K. ; Erwin, Cheryl ; Juhl, Andrew R. ; Mengeling, Michelle ; 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 their own words : Reports of stigma and genetic discrimination by people at risk for huntington disease in the international RESPOND-HD study. In: American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics. 2010 ; Vol. 153, No. 6. pp. 1150-1159.
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abstract = "Genetic discrimination may be experienced in the day-to-day lives of people at risk for Huntington disease (HD), encompassing occurrences in the workplace, when seeking insurance, within social relationships, and during other daily encounters. At -risk individuals who have tested either positive or negative for the genetic expansion that causes HD, as well as at-risk persons with a 50{\%} chance for developing the disorder but have not had DNA testing completed the International RESPOND-HD (I-RESPOND-HD) survey. One of the study's purposes was to examine perceptions of genetic stigmatization and discrimination. A total of 412 out of 433 participants provided narrative comments, and 191 provided related codable narrative data. The core theme, Information Control, refers to organizational policies and interpersonal actions. This theme was found in narrative comments describing genetic discrimination perceptions across employment, insurance, social, and other situations. These reports were elaborated with five themes: What They Encountered, What They Felt, What Others Did, What They Did, and What Happened. Although many perceptions were coded as hurtful, this was not true in all instances. Findings document that reports of genetic discrimination are highly individual, and both policy as well as interpersonal factors contribute to the outcome of potentially discriminating events.",
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