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In their own words: Reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND‐HD study
Author(s) -
Williams Janet K.,
Erwin Cheryl,
Juhl Andrew R.,
Mengeling Michelle,
Bombard Yvonne,
Hayden Michael R.,
Quaid Kimberly,
Shoulson Ira,
Taylor Sandra,
Paulsen Jane S.
Publication year - 2010
Publication title -
american journal of medical genetics part b: neuropsychiatric genetics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.393
H-Index - 126
eISSN - 1552-485X
pISSN - 1552-4841
DOI - 10.1002/ajmg.b.31080
Subject(s) - genetic discrimination , psychology , narrative , social psychology , stigma (botany) , huntington's disease , interpersonal communication , disease , theme (computing) , perception , genetic testing , clinical psychology , developmental psychology , medicine , psychiatry , pathology , computer science , operating system , philosophy , linguistics , neuroscience
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. © 2010 Wiley‐Liss, Inc.