{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,7]],"date-time":"2026-01-07T23:23:46Z","timestamp":1767828226745,"version":"3.49.0"},"reference-count":46,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,12,27]],"date-time":"2022-12-27T00:00:00Z","timestamp":1672099200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000051","name":"National Human Genome Research Institute","doi-asserted-by":"publisher","award":["HG009496"],"award-info":[{"award-number":["HG009496"]}],"id":[{"id":"10.13039\/100000051","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2023,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Despite the moniker \u201cprecision medicine,\u201d genetic diagnoses are often imprecise with respect to prognosis. In a period when prognoses are evolving in lockstep with advances in genetic diagnostics and therapeutics, it is critical that clinicians and researchers consider how prognosis is communicated beyond the moment of diagnosis. Research has shown that genetic diagnoses are described differently in pre\u2010 and postnatal contexts, but we know relatively little about how patients and families make sense of prognostic information as affected children grow up. Here, I draw on research and personal narratives to describe how prognostic information impacts individuals' conceptions of the future. A deeper understanding of how patients and families view prognosis is important because parents may need support as prognostic conversations arise and because perceptions of prognosis may influence ideas about the future, psychological health, decisions, and planning. By exploring how specific ideas about an individuals' future take hold, clinicians and researchers may begin to identify the benefits, harms, and accuracy of varied sources of prognostic information, opening new areas of bioethical investigation. In closing, I propose prognostic imagination as a useful concept for considering how patients and families experience prognostic information amidst therapeutic innovations and evolving futures.<\/jats:p>","DOI":"10.1002\/jgc4.1660","type":"journal-article","created":{"date-parts":[[2022,12,28]],"date-time":"2022-12-28T05:09:08Z","timestamp":1672204148000},"page":"762-767","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Prognostic imagination: Genetic counseling amidst therapeutic innovation and evolving futures"],"prefix":"10.1002","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0863-1395","authenticated-orcid":false,"given":"Rebecca","family":"Mueller","sequence":"first","affiliation":[{"name":"Department of Medical Ethics and Health Policy and Master of Science in Genetic Counseling Program Perelman School of Medicine, University of Pennsylvania Philadelphia Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,12,27]]},"reference":[{"key":"e_1_2_10_2_1","unstructured":"Battersby W. (2022).Salt in My Soul [Film]. Giant Pictures."},{"key":"e_1_2_10_3_1","volume-title":"Planning for a future I never thought I'd have with CF","author":"Boylan S.","year":"2020"},{"key":"e_1_2_10_4_1","volume-title":"Orkambi: A life sentence","author":"Braid A.","year":"2015"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2021\u2010052130"},{"key":"e_1_2_10_6_1","unstructured":"Carmona S.(2016).Reaching Milestones in Spite of CF.https:\/\/www.cff.org\/community\u2010posts\/2016\u201012\/reaching\u2010milestones\u2010spite\u2010cf"},{"key":"e_1_2_10_7_1","volume-title":"Understanding changes in life expectancy","author":"CFF.org"},{"key":"e_1_2_10_8_1","volume-title":"Death foretold: Prophecy and prognosis in medical care","author":"Christakis N. A.","year":"1999"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0000000000000213"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1378\/chest.11\u20101323"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.coph.2022.102239"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.spen.2006.06.009"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.23975"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2016.09.067"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1353\/ken.2017.0020"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2021.12.010"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1097\/00125817\u2010200209000\u201000008"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1097\/00125817\u2010200209000\u201000009"},{"key":"e_1_2_10_19_1","volume-title":"Real talk: Expectations vs. reality \u2013 Part 1: What we were told","author":"Knight A.","year":"2015"},{"key":"e_1_2_10_20_1","volume-title":"Real talk: Expectations vs. reality \u2013 Part 2: Our lives today","author":"Knight A.","year":"2015"},{"key":"e_1_2_10_21_1","volume-title":"Real talk: Expectations vs. reality \u2013 Part 3: This is CF","author":"Knight A.","year":"2015"},{"key":"e_1_2_10_22_1","volume-title":"Navigating the limits of CF","author":"Koerner T.","year":"2016"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.25859"},{"issue":"4","key":"e_1_2_10_24_1","first-page":"936","article-title":"Twice\u2010told tales: Stories about genetic disorders","volume":"51","author":"Lippman A.","year":"1992","journal-title":"American Journal of Human Genetics"},{"key":"e_1_2_10_25_1","volume-title":"Survival trending upward but what does this really mean?","author":"Marshall B. C.","year":"2017"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.36019\/9780813549736-012"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41582\u2010020\u201000413\u20104"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732311421486"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102214.2011.01317.x"},{"key":"e_1_2_10_30_1","first-page":"37","volume-title":"Psychosocial aspects of cystic fibrosis","author":"Mueller R.","year":"2001"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010012\u20109515\u20109"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.46743\/2160\u20103715\/2019.3549"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12890\u2010022\u201001825\u20102"},{"issue":"1","key":"e_1_2_10_34_1","first-page":"1031","article-title":"Communicating prognosis in sickle cell disease: A qualitative study of adolescents with sickle cell disease, their parents, and providers","volume":"3","author":"Pecker L. H.","year":"2015","journal-title":"Annals of Pediatrics and Child Health"},{"key":"e_1_2_10_35_1","doi-asserted-by":"publisher","DOI":"10.1353\/hpu.2020.0030"},{"key":"e_1_2_10_36_1","volume-title":"How long do patients with cystic fibrosis live?","author":"Pool J. J.","year":"2019"},{"key":"e_1_2_10_37_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12461"},{"key":"e_1_2_10_38_1","doi-asserted-by":"publisher","DOI":"10.1136\/bcr\u20102018\u2010228821"},{"key":"e_1_2_10_39_1","doi-asserted-by":"crossref","first-page":"265","DOI":"10.51644\/9781554581214-030","volume-title":"Unfitting stories: Narrative approaches to disease, Disabiility, and trauma","author":"Schubert D.","year":"2007"},{"key":"e_1_2_10_40_1","doi-asserted-by":"publisher","DOI":"10.1525\/ohr.2005.32.1.35"},{"key":"e_1_2_10_41_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2016\u20101278"},{"key":"e_1_2_10_42_1","unstructured":"Stump J.(2016).Cystic Fibrosis Foundation.https:\/\/www.cff.org\/community\u2010posts\/2016\u201007\/seeing\u2010my\u2010future\u2010first\u2010time\u2010cf"},{"key":"e_1_2_10_43_1","doi-asserted-by":"publisher","DOI":"10.1177\/0022146510386794"},{"key":"e_1_2_10_44_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2018.09.031"},{"key":"e_1_2_10_45_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2019.05.015"},{"key":"e_1_2_10_46_1","doi-asserted-by":"publisher","DOI":"10.1002\/hast.1018"},{"key":"e_1_2_10_47_1","volume-title":"50 is the new 25: Life expectancy with CF","author":"Whitworth J.","year":"2022"}],"container-title":["Journal of Genetic Counseling"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/jgc4.1660","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/jgc4.1660","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/jgc4.1660","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,10,11]],"date-time":"2024-10-11T02:38:17Z","timestamp":1728614297000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/jgc4.1660"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,12,27]]},"references-count":46,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2023,8]]}},"alternative-id":["10.1002\/jgc4.1660"],"URL":"https:\/\/doi.org\/10.1002\/jgc4.1660","archive":["Portico"],"relation":{},"ISSN":["1059-7700","1573-3599"],"issn-type":[{"value":"1059-7700","type":"print"},{"value":"1573-3599","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,12,27]]},"assertion":[{"value":"2022-08-04","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-11-11","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-12-27","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}