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At\u2010risk individuals who have tested either positive or negative for the genetic expansion that causes HD, as well as at\u2010risk persons with a 50% chance for developing the disorder but have not had DNA testing completed the International RESPOND\u2010HD (I\u2010RESPOND\u2010HD) 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. \u00a9 2010 Wiley\u2010Liss, Inc.<\/jats:p>","DOI":"10.1002\/ajmg.b.31080","type":"journal-article","created":{"date-parts":[[2010,4,5]],"date-time":"2010-04-05T16:05:17Z","timestamp":1270483517000},"page":"1150-1159","source":"Crossref","is-referenced-by-count":48,"title":["In their own words: Reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND\u2010HD study"],"prefix":"10.1002","volume":"153B","author":[{"given":"Janet K.","family":"Williams","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheryl","family":"Erwin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew R.","family":"Juhl","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Mengeling","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yvonne","family":"Bombard","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael R.","family":"Hayden","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kimberly","family":"Quaid","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ira","family":"Shoulson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Taylor","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane S.","family":"Paulsen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"the I\u2010RESPOND\u2010HD Investigators of the Huntington Study Group","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2010,8,2]]},"reference":[{"key":"e_1_2_6_2_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e318194ee75"},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.4088\/JCP.v69n1111"},{"key":"e_1_2_6_4_1","volume-title":"Genetic information and employment: A report on law in the United States","author":"Biser A","year":"2004"},{"key":"e_1_2_6_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2007.00770.x"},{"key":"e_1_2_6_6_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201937"},{"key":"e_1_2_6_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.b2175"},{"key":"e_1_2_6_8_1","first-page":"504","volume-title":"Social stigma","author":"Crocker J","year":"1998"},{"key":"e_1_2_6_9_1","first-page":"504","volume-title":"Handbook of Social Psychology","author":"Crocker J","year":"1998"},{"key":"e_1_2_6_10_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.2003.02579.x"},{"key":"e_1_2_6_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.b.31079"},{"key":"e_1_2_6_12_1","first-page":"147","volume-title":"Stigma: Notes on the management of spoiled identity","author":"Goffman E","year":"1963"},{"key":"e_1_2_6_13_1","article-title":"Adversity and resilience in ageing\u2014Exploring lessons from our seniors","author":"Goh A","journal-title":"Ageing Int."},{"key":"e_1_2_6_14_1","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.63.7.991"},{"key":"e_1_2_6_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/019394598801000207"},{"key":"e_1_2_6_16_1","doi-asserted-by":"publisher","DOI":"10.1146\/annurev.soc.27.1.363"},{"key":"e_1_2_6_17_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610205002048"},{"issue":"2","key":"e_1_2_6_18_1","first-page":"225","article-title":"Is there a pink slip in my gene? 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