{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,20]],"date-time":"2026-02-20T08:56:59Z","timestamp":1771577819185,"version":"3.50.1"},"reference-count":31,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2012,12,20]],"date-time":"2012-12-20T00:00:00Z","timestamp":1355961600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinical Genetics"],"published-print":{"date-parts":[[2013,9]]},"abstract":"<jats:p>The Genetic Information Nondiscrimination Act (<jats:styled-content style=\"fixed-case\">GINA<\/jats:styled-content>) of 2008 was the first US legislation to address genetic discrimination. We sought to assess understanding of <jats:styled-content style=\"fixed-case\">GINA<\/jats:styled-content> among individuals affected by the autosomal dominant condition, Huntington disease (<jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>). We conducted a cross\u2010sectional survey of individuals with varying risk of <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content> to assess their familiarity with <jats:styled-content style=\"fixed-case\">GINA<\/jats:styled-content>. As a control, individuals were surveyed about their familiarity with the Health Insurance Portability and Accountability Act (<jats:styled-content style=\"fixed-case\">HIPAA<\/jats:styled-content>). Those who reported familiarity with <jats:styled-content style=\"fixed-case\">GINA<\/jats:styled-content> 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 <jats:styled-content style=\"fixed-case\">GINA<\/jats:styled-content> (41% slightly, somewhat, or very familiar) than with <jats:styled-content style=\"fixed-case\">HIPAA<\/jats:styled-content> (65%; p\u2009&lt;\u20090.0001). Of individuals with or at risk for <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content> who reported some familiarity with <jats:styled-content style=\"fixed-case\">GINA<\/jats:styled-content>, less than half correctly identified <jats:styled-content style=\"fixed-case\">GINA<\/jats:styled-content>'s protections, and less than 15% correctly identified its limitations. Thus, among individuals affected by <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>, familiarity with and knowledge of <jats:styled-content style=\"fixed-case\">GINA<\/jats:styled-content> are low. The effectiveness of the legislation may be limited by this lack of knowledge.<\/jats:p>","DOI":"10.1111\/cge.12065","type":"journal-article","created":{"date-parts":[[2012,11,21]],"date-time":"2012-11-21T07:26:26Z","timestamp":1353482786000},"page":"251-257","source":"Crossref","is-referenced-by-count":15,"title":["Knowledge of the Genetic Information Nondiscrimination act among individuals affected by Huntington disease"],"prefix":"10.1111","volume":"84","author":[{"given":"ER","family":"Dorsey","sequence":"first","affiliation":[{"name":"Department of Neurology Johns Hopkins Medicine  Baltimore MD USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"KC","family":"Darwin","sequence":"additional","affiliation":[{"name":"Department of Neurology Johns Hopkins Medicine  Baltimore MD USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"PE","family":"Nichols","sequence":"additional","affiliation":[{"name":"Department of Neurology Johns Hopkins Medicine  Baltimore MD USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"JH","family":"Kwok","sequence":"additional","affiliation":[{"name":"Department of Economics University of California  Berkeley CA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C","family":"Bennet","sequence":"additional","affiliation":[{"name":"Department of Medicine Massachusetts General Hospital  Boston MA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"LS","family":"Rosenthal","sequence":"additional","affiliation":[{"name":"Department of Neurology Johns Hopkins Medicine  Baltimore MD USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Y","family":"Bombard","sequence":"additional","affiliation":[{"name":"Yale University School of Public Health  New Haven CT USA"},{"name":"Center for Health Policy and Outcomes Memorial Sloan\u2010Kettering Cancer Center  New York NY USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"I","family":"Shoulson","sequence":"additional","affiliation":[{"name":"Georgetown University Medical Center  Washington DC USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"E","family":"Oster","sequence":"additional","affiliation":[{"name":"Booth School of Business University of Chicago  Chicago IL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2012,12,20]]},"reference":[{"key":"e_1_2_6_2_1","unstructured":"Senator Ted Kennedy in Support of Genetic Information Nondiscrimination Bill. 2009. Retrieved fromhttp:\/\/www.allamericanpatriots.com\/48746785_senator\u2010ted\u2010kennedy\u2010support\u2010genetic\u2010information\u2010no."},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.suc.2008.04.004"},{"key":"e_1_2_6_4_1","unstructured":"Genetic Information Nondiscrimination Act. 110th United States Congress. 2008"},{"key":"e_1_2_6_5_1","unstructured":"Harmon A. Congress passes bill to bar bias based on genes. The New York Times [serial on the Internet]. 2008."},{"key":"e_1_2_6_6_1","volume-title":"Huntington disease","author":"Warby SC","year":"1993"},{"key":"e_1_2_6_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/0092-8674(93)90585-E"},{"key":"e_1_2_6_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2006.00668.x"},{"key":"e_1_2_6_9_1","unstructured":"Cooperative Huntington's Observational Research Trial (COHORT). Retrieved July 3 2012 fromhttp:\/\/www.huntington\u2010study\u2010group.org\/ClinicalResearch\/ClinicalTrialsObservationalStudiesinProgress\/COHORT\/tabid\/83\/Default.aspx."},{"key":"e_1_2_6_10_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0029522"},{"issue":"3","key":"e_1_2_6_11_1","first-page":"460","article-title":"Huntington disease and the abuse of genetics","volume":"50","author":"Harper PS","year":"1992","journal-title":"Am J Hum Genet"},{"key":"e_1_2_6_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(10)60957-9"},{"key":"e_1_2_6_13_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.b.31080"},{"key":"e_1_2_6_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.b.30600"},{"key":"e_1_2_6_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.b.31079"},{"key":"e_1_2_6_16_1","doi-asserted-by":"publisher","DOI":"10.1146\/annurev-genom-090711-163800"},{"key":"e_1_2_6_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2008.01016.x"},{"key":"e_1_2_6_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.b.32016"},{"issue":"4","key":"e_1_2_6_19_1","first-page":"367","article-title":"A theoretical psychological perspective on predictive testing for late onset hereditary diseases","volume":"18","author":"Mularczyk E","year":"2007","journal-title":"Genet Couns"},{"key":"e_1_2_6_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(00)00064-2"},{"key":"e_1_2_6_21_1","unstructured":"Greenhouse S. Law seeks to Ban Misuse of genetic testing.The New York Times. 2009"},{"key":"e_1_2_6_22_1","unstructured":"Your genes your privacy.USA Today. May 21 2008"},{"key":"e_1_2_6_23_1","unstructured":"VogelS.Rules Target Genetic Bias.The Washington Post.2009"},{"key":"e_1_2_6_24_1","doi-asserted-by":"publisher","DOI":"10.1037\/0090-5550.48.2.93"},{"key":"e_1_2_6_25_1","unstructured":"Office of Disability Employment Policy. Retrieved May 21 2012 fromhttp:\/\/www.dol.gov\/odep\/."},{"key":"e_1_2_6_26_1","unstructured":"Office of Disability Integration and Coordination. Retrieved May 21 2012 fromhttp:\/\/www.fema.gov\/about\/odic\/."},{"key":"e_1_2_6_27_1","unstructured":"Senior Advisor for Accessible Transportation at the Department of Transportation. Retrieved May 21 2012 fromhttp:\/\/www.dot.gov\/citizen_services\/disability\/disability.html."},{"key":"e_1_2_6_28_1","unstructured":"Special Advisor for International Disability Rights. Retrieved May 21 2012 fromhttp:\/\/www.state.gov\/j\/drl\/sadr\/index.htm."},{"key":"e_1_2_6_29_1","unstructured":"Genetic Alliance. Retrieved May 21 2012 from http:\/\/www.geneticalliance.org."},{"key":"e_1_2_6_30_1","unstructured":"National Coalition for Health Professional Education in Genetics. Retrieved May 21 2012 fromhttp:\/\/www.nchpeg.org\/."},{"key":"e_1_2_6_31_1","unstructured":"Genetics and Public Policy Center. Retrieved May 21 2012 fromhttp:\/\/www.dnapolicy.org\/gina\/."},{"key":"e_1_2_6_32_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e31821d69b8"}],"container-title":["Clinical Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fcge.12065","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cge.12065","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,3]],"date-time":"2023-10-03T14:50:12Z","timestamp":1696344612000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cge.12065"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2012,12,20]]},"references-count":31,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2013,9]]}},"alternative-id":["10.1111\/cge.12065"],"URL":"https:\/\/doi.org\/10.1111\/cge.12065","archive":["Portico"],"relation":{},"ISSN":["0009-9163","1399-0004"],"issn-type":[{"value":"0009-9163","type":"print"},{"value":"1399-0004","type":"electronic"}],"subject":[],"published":{"date-parts":[[2012,12,20]]}}}