{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,19]],"date-time":"2026-02-19T09:35:34Z","timestamp":1771493734205,"version":"3.50.1"},"reference-count":20,"publisher":"Informa UK Limited","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2022,5,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Down syndrome (DS) research is advancing rapidly, yet efforts have raised ethical questions. This mixed methods study describes views of people with DS (self-advocates) and their parents regarding medical interventions for DS. Responses from 35\/171 (20.5%) self-advocates and 430\/867 (49.6%) parents showed the majority of self-advocates were glad they have DS (27\/35; 77.1%) and liked who they are (33\/35; 94.3%), but did want to learn faster (23\/35; 65.7%). Parents much more commonly agreed with a willingness to give medications to prevent Alzheimer's disease (427\/429; 99.5%) or blood cancer (428\/430; 99.5%) as compared with a medicine to cure DS (225\/425; 52.9%). Qualitative comments intertwined DS with identity, yet indicated desire for improved quality of life and opportunities. Responses decoupled DS itself from the complications of DS, with treatment of complications being more acceptable.<\/jats:p>","DOI":"10.1352\/1944-7558-127.3.194","type":"journal-article","created":{"date-parts":[[2022,4,20]],"date-time":"2022-04-20T12:58:13Z","timestamp":1650459493000},"page":"194-212","source":"Crossref","is-referenced-by-count":1,"title":["Down Syndrome Cures: Perspectives of People With Down Syndrome and Their Parents"],"prefix":"10.1080","volume":"127","author":[{"given":"Julie M.","family":"Rogers","sequence":"first","affiliation":[{"name":"Julie M. Rogers, Amy L. Weaver, and Rachel D. Havyer, Mayo Clinic."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Amy L.","family":"Weaver","sequence":"additional","affiliation":[{"name":"Julie M. Rogers, Amy L. Weaver, and Rachel D. Havyer, Mayo Clinic."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel D.","family":"Havyer","sequence":"additional","affiliation":[{"name":"Julie M. Rogers, Amy L. Weaver, and Rachel D. Havyer, Mayo Clinic."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"301","published-online":{"date-parts":[[2022,4,20]]},"reference":[{"key":"2022042016572495200_i1944-7558-127-3-194-Aleccia1","unstructured":"Aleccia,\n              J.\n            \n          \n          (2013,\n\t\t\t\t\tAugust11).\n\t\t\t\t\tCould it be a \u201ccure\u201d? 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Translating translation in Down syndrome.\n\t\t\t\t\tScience,\n\t\t\t\t\t366(6467),\n\t\t\t\t\t797\u2013\n\t\t\t\t\t798.\n\t\t\t\t\thttp:\/\/dx.doi.org\/10.1126\/science.aaz7128","DOI":"10.1126\/science.aaz7128"},{"key":"2022042016572495200_i1944-7558-127-3-194-Harmon1","unstructured":"Harmon,\n              A.\n            \n          \n          (2005,\n\t\t\t\t\tNovember20).\n\t\t\t\t\tThe problem with an almost-perfect genetic world.\n\t\t\t\t\tThe New York Times.\n\t\t\t\t\thttps:\/\/www.nytimes.com\/2005\/11\/20\/weekinreview\/the-problem-with-an-almostperfect-genetic-world.html"},{"key":"2022042016572495200_i1944-7558-127-3-194-Hart1","doi-asserted-by":"crossref","unstructured":"Hart,\n              S. J.,\n            \n            \n              Visootsak,\n              J.,\n            \n            \n              Tamburri,\n              P.,\n            \n            \n              Phuong,\n              P.,\n            \n            \n              Baumer,\n              N.,\n            \n            \n              Hernandez,\n              M. D.,\n            \n            \n              Skotko,\n              B. G.,\n            \n            \n              Ochoa-Lubinoff,\n              C.,\n            \n            \n              Liogier D'Ardhuy,\n              X.,\n            \n            \n              Kishnani,\n              P. S.,\n             &\n\t\t\t\t\t\tSpiridigliozzi,G. A.\n          (2017).\n\t\t\t\t\tPharmacological interventions to improve cognition and adaptive functioning in Down syndrome: Strides to date. American Journal of Medical Genetics Part A,173(11), 3029\u20133041.http:\/\/dx.doi.org\/10.1002\/ajmg.a.38465","DOI":"10.1002\/ajmg.a.38465"},{"key":"2022042016572495200_i1944-7558-127-3-194-Inglis1","doi-asserted-by":"crossref","unstructured":"Inglis,\n              A.,\n            \n            \n              Lohn,\n              Z.,\n            \n            \n              Austin,\n              J. C.,\n             &\n\t\t\t\t\t\tHippman,C.\n          (2014).\n\t\t\t\t\tA \u201ccure\u201d for Down syndrome: What do parents want?Clinical Genetics, 86(4),\n\t\t\t\t\t310\u2013\n\t\t\t\t\t317.\n\t\t\t\t\thttp:\/\/dx.doi.org\/10.1111\/cge.12364","DOI":"10.1111\/cge.12364"},{"key":"2022042016572495200_i1944-7558-127-3-194-Kaposy1","doi-asserted-by":"crossref","unstructured":"Kaposy,\n              C.\n            \n          \n          (2013).\n\t\t\t\t\tA disability critique of the new prenatal test for Down syndrome.\n\t\t\t\t\tKennedy Institute of Ethics Journal, 23(4),\n\t\t\t\t\t299\u2013\n\t\t\t\t\t324.\n\t\t\t\t\thttp:\/\/dx.doi.org\/10.1353\/ken.2013.0017","DOI":"10.1353\/ken.2013.0017"},{"key":"2022042016572495200_i1944-7558-127-3-194-Laidman1","doi-asserted-by":"crossref","unstructured":"Laidman,\n              J.\n            \n          \n          (2014).\n\t\t\t\t\tDrugs for Down syndrome.\n\t\t\t\t\tScientific American Mind, 25(2),\n\t\t\t\t\t314\u2013\n\t\t\t\t\t318.\n\t\t\t\t\thttp:\/\/dx.doi.org\/10.1038\/scientificamericanmind0314-18a","DOI":"10.1038\/scientificamericanmind0314-18a"},{"key":"2022042016572495200_i1944-7558-127-3-194-Michie1","doi-asserted-by":"crossref","unstructured":"Michie,\n              M.,\n             &\n\t\t\t\t\t\tAllyse,M.\n          (2019).\n\t\t\t\t\tGene modification therapies: Views of parents of people with Down syndrome.\n\t\t\t\t\tGenetics in Medicine, 21(2),\n\t\t\t\t\t487\u2013\n\t\t\t\t\t492.\n\t\t\t\t\thttp:\/\/dx.doi.org\/10.1038\/s41436-018-0077-6","DOI":"10.1038\/s41436-018-0077-6"},{"key":"2022042016572495200_i1944-7558-127-3-194-Riggan1","doi-asserted-by":"crossref","unstructured":"Riggan,\n              K. A.,\n            \n            \n              Nyquist,\n              C.,\n            \n            \n              Michie,\n              M.,\n             &\n\t\t\t\t\t\tAllyse,M. A.\n          (2020).\n\t\t\t\t\tEvaluating the risks and benefits of genetic and pharmacologic interventions for Down syndrome: Views of parents.\n\t\t\t\t\tAmerican Journal on Intellectual and Developmental Disabilities, 125(1),\n\t\t\t\t\t1\u2013\n\t\t\t\t\t13.\n\t\t\t\t\thttp:\/\/dx.doi.org\/10.1352\/1944-7558-125.1.1","DOI":"10.1352\/1944-7558-125.1.1"},{"key":"2022042016572495200_i1944-7558-127-3-194-Skotko1","doi-asserted-by":"crossref","unstructured":"Skotko,\n              B. G.,\n            \n            \n              Levine,\n              S. P.,\n             &\n\t\t\t\t\t\tGoldsteinR.\n          (2011a).\n\t\t\t\t\tHaving a son or daughter with Down syndrome: Perspectives from mothers and fathers.\n\t\t\t\t\tAmerican Journal of Medical Genetics Part A, 155(10),\n\t\t\t\t\t2335\u2013\n\t\t\t\t\t2347.\n\t\t\t\t\thttp:\/\/dx.doi.org\/10.1002\/ajmg.a.34293","DOI":"10.1002\/ajmg.a.34293"},{"key":"2022042016572495200_i1944-7558-127-3-194-Skotko2","doi-asserted-by":"crossref","unstructured":"Skotko,\n              B. G.,\n            \n            \n              Levine,\n              S. P.,\n             &\n\t\t\t\t\t\tGoldsteinR.\n          (2011b).\n\t\t\t\t\tSelf-perceptions from people with Down syndrome.\n\t\t\t\t\tAmerican Journal of Medical Genetics Part A, 155(10),\n\t\t\t\t\t2360\u2013\n\t\t\t\t\t2369.\n\t\t\t\t\thttp:\/\/dx.doi.org\/10.1002\/ajmg.a.34235","DOI":"10.1002\/ajmg.a.34235"},{"key":"2022042016572495200_i1944-7558-127-3-194-Skotko3","doi-asserted-by":"crossref","unstructured":"Skotko,\n              B. G.,\n            \n            \n              Levine,\n              S. P.,\n            \n            \n              Macklin,\n              E. A.,\n             &\n\t\t\t\t\t\tGoldstein,R. D.\n          (2016).\n\t\t\t\t\tFamily perspectives about Down syndrome.\n\t\t\t\t\tAmerican Journal of Medical Genetics Part A,170(4), 930\u2013941.http:\/\/dx.doi.org\/10.1002\/ajmg.a.37520","DOI":"10.1002\/ajmg.a.37520"},{"key":"2022042016572495200_i1944-7558-127-3-194-Sullivan1","doi-asserted-by":"crossref","unstructured":"Sullivan,\n              D. M.,\n             &\n\t\t\t\t\t\tSalladay,S. A.\n          (2007).\n\t\t\t\t\tGene therapy: Restoring health or playing God?Journal of Christian Nursing, 24(4),\n\t\t\t\t\t199\u2013\n\t\t\t\t\t205.\n\t\t\t\t\thttp:\/\/dx.doi.org\/10.1097\/01.cnj.0000291534.56059.7d","DOI":"10.1097\/01.CNJ.0000291534.56059.7d"}],"container-title":["American Journal on Intellectual and Developmental Disabilities"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/meridian.allenpress.com\/ajidd\/article-pdf\/127\/3\/194\/3047071\/i1944-7558-127-3-194.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/meridian.allenpress.com\/ajidd\/article-pdf\/127\/3\/194\/3047071\/i1944-7558-127-3-194.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,1,13]],"date-time":"2026-01-13T16:34:59Z","timestamp":1768322099000},"score":1,"resource":{"primary":{"URL":"https:\/\/meridian.allenpress.com\/ajidd\/article\/127\/3\/194\/480687\/Down-Syndrome-Cures-Perspectives-of-People-With"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,4,20]]},"references-count":20,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2022,4,20]]},"published-print":{"date-parts":[[2022,5,1]]}},"URL":"https:\/\/doi.org\/10.1352\/1944-7558-127.3.194","relation":{},"ISSN":["1944-7558","1944-7515"],"issn-type":[{"value":"1944-7558","type":"electronic"},{"value":"1944-7515","type":"print"}],"subject":[],"published":{"date-parts":[[2022,4,20]]}}}