{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T19:24:42Z","timestamp":1789154682105,"version":"build-2803163510"},"reference-count":36,"publisher":"Elsevier BV","issue":"3","license":[{"start":{"date-parts":[[2023,3,1]],"date-time":"2023-03-01T00:00:00Z","timestamp":1677628800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2023,3,1]],"date-time":"2023-03-01T00:00:00Z","timestamp":1677628800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2024,3,1]],"date-time":"2024-03-01T00:00:00Z","timestamp":1709251200000},"content-version":"vor","delay-in-days":366,"URL":"http:\/\/www.elsevier.com\/open-access\/userlicense\/1.0\/"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000051","name":"National Human Genome Research Institute","doi-asserted-by":"publisher","award":["K01-HG009173"],"award-info":[{"award-number":["K01-HG009173"]}],"id":[{"id":"10.13039\/100000051","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000051","name":"National Human Genome Research Institute","doi-asserted-by":"publisher","award":["R01-HG009922"],"award-info":[{"award-number":["R01-HG009922"]}],"id":[{"id":"10.13039\/100000051","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["OT2-OD026553"],"award-info":[{"award-number":["OT2-OD026553"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["R01-HD090019"],"award-info":[{"award-number":["R01-HD090019"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["R01-HL143295"],"award-info":[{"award-number":["R01-HL143295"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["U01-TR003201"],"award-info":[{"award-number":["U01-TR003201"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100009633","name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","doi-asserted-by":"publisher","award":["U19-HD077671"],"award-info":[{"award-number":["U19-HD077671"]}],"id":[{"id":"10.13039\/100009633","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["gimjournal.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Genetics in Medicine"],"published-print":{"date-parts":[[2023,3]]},"DOI":"10.1016\/j.gim.2022.100002","type":"journal-article","created":{"date-parts":[[2022,12,19]],"date-time":"2022-12-19T20:02:03Z","timestamp":1671480123000},"page":"100002","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":26,"title":["Parents\u2019 decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project"],"prefix":"10.1016","volume":"25","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6541-3904","authenticated-orcid":false,"given":"Stacey","family":"Pereira","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amanda M.","family":"Gutierrez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jill Oliver","family":"Robinson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kurt D.","family":"Christensen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Casie A.","family":"Genetti","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carrie L.","family":"Blout Zawatsky","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca L.","family":"Hsu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bethany","family":"Zettler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa Kurtz","family":"Uveges","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard B.","family":"Parad","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alan H.","family":"Beggs","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingrid A.","family":"Holm","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert C.","family":"Green","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy L.","family":"McGuire","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"3","key":"10.1016\/j.gim.2022.100002_bib1","first-page":"620","article-title":"Committee on Genetics, American College of Medical Genetics and Genomics Social, Ethical, Legal Issues Committee. Ethical and policy issues in genetic testing and screening of children","volume":"131","year":"2013","journal-title":"Pediatrics"},{"issue":"1","key":"10.1016\/j.gim.2022.100002_bib2","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1016\/j.ajhg.2015.05.022","article-title":"Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents","volume":"97","author":"Botkin","year":"2015","journal-title":"Am J Hum Genet"},{"issue":"6","key":"10.1016\/j.gim.2022.100002_bib3","doi-asserted-by":"crossref","first-page":"720","DOI":"10.1038\/ejhg.2009.26","article-title":"Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics","volume":"17","year":"2009","journal-title":"Eur J Hum Genet"},{"key":"10.1016\/j.gim.2022.100002_bib6","series-title":"Freedom and Fulfillment: Philosophical Essays","author":"Feinberg","year":"1992"},{"issue":"9","key":"10.1016\/j.gim.2022.100002_bib7","doi-asserted-by":"crossref","first-page":"519","DOI":"10.1136\/medethics-2011-100055","article-title":"Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments","volume":"38","author":"Mand","year":"2012","journal-title":"J\u00a0Med Ethics"},{"issue":"2","key":"10.1016\/j.gim.2022.100002_bib8","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1177\/1556264617696921","article-title":"Children\u2019s decision-making involvement about research participation: associations with perceived fairness and self-efficacy","volume":"12","author":"Miller","year":"2017","journal-title":"J\u00a0Empir Res Hum Res Ethics"},{"issue":"7","key":"10.1016\/j.gim.2022.100002_bib9","doi-asserted-by":"crossref","first-page":"565","DOI":"10.1038\/gim.2013.73","article-title":"ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing","volume":"15","author":"Green","year":"2013","journal-title":"Genet Med"},{"issue":"8","key":"10.1016\/j.gim.2022.100002_bib10","doi-asserted-by":"crossref","first-page":"535","DOI":"10.1136\/medethics-2016-103564","article-title":"Parents perspectives on whole genome sequencing for their children: qualified enthusiasm?","volume":"43","author":"Anderson","year":"2017","journal-title":"J\u00a0Med Ethics"},{"issue":"Suppl 1","key":"10.1016\/j.gim.2022.100002_bib11","doi-asserted-by":"crossref","first-page":"S36","DOI":"10.1542\/peds.2015-3731H","article-title":"Parental views on expanded newborn screening using whole-genome sequencing","volume":"137","author":"Joseph","year":"2016","journal-title":"Pediatrics"},{"issue":"6","key":"10.1016\/j.gim.2022.100002_bib12","doi-asserted-by":"crossref","first-page":"911","DOI":"10.1038\/s41431-020-00794-6","article-title":"Parents, their children, whole exome sequencing and unsolicited findings: growing towards the child\u2019s future autonomy","volume":"29","author":"Tibben","year":"2021","journal-title":"Eur J Hum Genet"},{"issue":"2","key":"10.1016\/j.gim.2022.100002_bib13","doi-asserted-by":"crossref","first-page":"97","DOI":"10.1177\/1556264617697839","article-title":"Preferences for the return of individual results from research on pediatric biobank samples","volume":"12","author":"Christensen","year":"2017","journal-title":"J\u00a0Empir Res Hum Res Ethics"},{"issue":"1","key":"10.1016\/j.gim.2022.100002_bib14","doi-asserted-by":"crossref","first-page":"44","DOI":"10.1093\/tbm\/ibx044","article-title":"Parental attitudes and expectations towards receiving genomic test results in healthy children","volume":"8","author":"Kulchak Rahm","year":"2018","journal-title":"Transl Behav Med"},{"issue":"8","key":"10.1016\/j.gim.2022.100002_bib15","doi-asserted-by":"crossref","first-page":"1038","DOI":"10.1002\/pd.6162","article-title":"Postpartum women\u2019s attitudes to disclosure of adult-onset conditions in pregnancy","volume":"42","author":"Libman","year":"2022","journal-title":"Prenat Diagn"},{"issue":"10","key":"10.1016\/j.gim.2022.100002_bib16","doi-asserted-by":"crossref","first-page":"1030","DOI":"10.1002\/pd.4635","article-title":"Prenatal whole-exome sequencing: parental attitudes","volume":"35","author":"Kalynchuk","year":"2015","journal-title":"Prenat Diagn"},{"issue":"5","key":"10.1016\/j.gim.2022.100002_bib17","doi-asserted-by":"crossref","first-page":"e1288","DOI":"10.1542\/peds.2010-0938","article-title":"Parents\u2019 attitudes toward pediatric genetic testing for common disease risk","volume":"127","author":"Tercyak","year":"2011","journal-title":"Pediatrics"},{"issue":"2","key":"10.1016\/j.gim.2022.100002_bib18","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1111\/cge.12254","article-title":"Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children","volume":"85","author":"Sapp","year":"2014","journal-title":"Clin Genet"},{"issue":"12","key":"10.1016\/j.gim.2022.100002_bib19","doi-asserted-by":"crossref","first-page":"1681","DOI":"10.1038\/ejhg.2016.100","article-title":"Whole-exome sequencing in pediatrics: parents\u2019 considerations toward return of unsolicited findings for their child","volume":"24","author":"Cornelis","year":"2016","journal-title":"Eur J Hum Genet"},{"key":"10.1016\/j.gim.2022.100002_bib20","doi-asserted-by":"crossref","unstructured":"Miner SA, Similuk M, Jamal L, Sapp J, Berkman BE. Genomic tools for health: secondary findings as findings to be shared. Genet Med. 24(11):2220-2227. https:\/\/doi:10.1016\/j.gim.2022.07.015","DOI":"10.1016\/j.gim.2022.07.015"},{"issue":"1","key":"10.1016\/j.gim.2022.100002_bib21","doi-asserted-by":"crossref","first-page":"225","DOI":"10.1186\/s12887-018-1200-1","article-title":"The BabySeq project: implementing genomic sequencing in newborns","volume":"18","author":"Holm","year":"2018","journal-title":"BMC Pediatr"},{"issue":"7","key":"10.1016\/j.gim.2022.100002_bib22","doi-asserted-by":"crossref","first-page":"809","DOI":"10.1038\/gim.2016.193","article-title":"A\u00a0curated gene list for reporting results of newborn genomic sequencing","volume":"19","author":"Ceyhan-Birsoy","year":"2017","journal-title":"Genet Med"},{"issue":"1","key":"10.1016\/j.gim.2022.100002_bib23","doi-asserted-by":"crossref","first-page":"76","DOI":"10.1016\/j.ajhg.2018.11.016","article-title":"Interpretation of genomic sequencing results in healthy and ill newborns: results from the BabySeq project","volume":"104","author":"Ceyhan-Birsoy","year":"2019","journal-title":"Am J Hum Genet"},{"issue":"7","key":"10.1016\/j.gim.2022.100002_bib24","doi-asserted-by":"crossref","first-page":"1372","DOI":"10.1038\/s41436-021-01146-5","article-title":"Discordant results between conventional newborn screening and genomic sequencing in the BabySeq Project","volume":"23","author":"Wojcik","year":"2021","journal-title":"Genet Med"},{"issue":"Suppl 1","key":"10.1016\/j.gim.2022.100002_bib25","doi-asserted-by":"crossref","first-page":"S37","DOI":"10.1542\/peds.2018-1099H","article-title":"Returning a genomic result for an adult-onset condition to the parents of a newborn: insights from the BabySeq project","volume":"143","author":"Holm","year":"2019","journal-title":"Pediatrics"},{"issue":"4","key":"10.1016\/j.gim.2022.100002_bib26","doi-asserted-by":"crossref","first-page":"1893","DOI":"10.1007\/s11135-017-0574-8","article-title":"Saturation in qualitative research: exploring its conceptualization and operationalization","volume":"52","author":"Saunders","year":"2018","journal-title":"Qual Quant"},{"key":"10.1016\/j.gim.2022.100002_bib27","series-title":"Research Methods in Anthropology: Qualitative and Quantitative Approaches","author":"Bernard","year":"2011"},{"issue":"Suppl 1","key":"10.1016\/j.gim.2022.100002_bib28","doi-asserted-by":"crossref","first-page":"S6","DOI":"10.1542\/peds.2018-1099C","article-title":"Perceived benefits, risks, and utility of newborn genomic sequencing in the BabySeq project","volume":"143","author":"Pereira","year":"2019","journal-title":"Pediatrics"},{"issue":"1","key":"10.1016\/j.gim.2022.100002_bib29","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1186\/s13073-019-0619-9","article-title":"Predispositional genome sequencing in healthy adults: design, participant characteristics, and early outcomes of the PeopleSeq Consortium","volume":"11","author":"Zoltick","year":"2019","journal-title":"Genome Med"},{"issue":"12","key":"10.1016\/j.gim.2022.100002_bib30","doi-asserted-by":"crossref","first-page":"2791","DOI":"10.1038\/s41436-019-0570-6","article-title":"Responsibility, culpability, and parental views on genomic testing for seriously ill children","volume":"21","author":"Malek","year":"2019","journal-title":"Genet Med"},{"issue":"10","key":"10.1016\/j.gim.2022.100002_bib31","doi-asserted-by":"crossref","first-page":"2190","DOI":"10.1038\/s41436-019-0483-4","article-title":"Rethinking the \u201copen future\u201d argument against predictive genetic testing of children","volume":"21","author":"Garrett","year":"2019","journal-title":"Genet Med"},{"issue":"6","key":"10.1016\/j.gim.2022.100002_bib32","doi-asserted-by":"crossref","first-page":"317","DOI":"10.1097\/GIM.0b013e3181de695c","article-title":"Effects of genetic risk information on children\u2019s psychosocial wellbeing: A systematic review of the literature","volume":"12","author":"Wade","year":"2010","journal-title":"Genet Med"},{"issue":"8","key":"10.1016\/j.gim.2022.100002_bib33","doi-asserted-by":"crossref","first-page":"755","DOI":"10.1038\/gim.2015.181","article-title":"The psychological impact of genetic information on children: a systematic review","volume":"18","author":"Wakefield","year":"2016","journal-title":"Genet Med"},{"issue":"11","key":"10.1016\/j.gim.2022.100002_bib34","doi-asserted-by":"crossref","first-page":"1132","DOI":"10.1001\/jamapediatrics.2021.2829","article-title":"Psychosocial effect of newborn genomic sequencing on families in the BabySeq project: a randomized clinical trial","volume":"175","author":"Pereira","year":"2021","journal-title":"JAMA Pediatr"},{"issue":"6","key":"10.1016\/j.gim.2022.100002_bib35","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2019-1031","article-title":"Ethical issues in newborn sequencing research: the case study of BabySeq","volume":"144","author":"Ross","year":"2019","journal-title":"Pediatrics"},{"issue":"9","key":"10.1016\/j.gim.2022.100002_bib36","doi-asserted-by":"crossref","first-page":"867","DOI":"10.1056\/NEJMp058060","article-title":"Newborn screening\u2014setting evidence-based policy for protection","volume":"353","author":"Natowicz","year":"2005","journal-title":"N\u00a0Engl J Med"},{"issue":"3","key":"10.1016\/j.gim.2022.100002_bib37","first-page":"552","article-title":"Disclosing secondary findings from pediatric sequencing to families: considering the \u201cbenefit to families.\u201d","volume":"43","author":"Wilfond","year":"2015","journal-title":"J\u00a0Law Med Ethics"},{"issue":"4","key":"10.1016\/j.gim.2022.100002_bib38","doi-asserted-by":"crossref","first-page":"16","DOI":"10.3102\/0013189X022004016","article-title":"Alternative arguments for generalizing from data as applied to qualitative research","volume":"22","author":"Firestone","year":"1993","journal-title":"Educ Res"}],"container-title":["Genetics in Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1098360022010693?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1098360022010693?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,22]],"date-time":"2025-10-22T01:55:23Z","timestamp":1761098123000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1098360022010693"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,3]]},"references-count":36,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2023,3]]}},"alternative-id":["S1098360022010693"],"URL":"https:\/\/doi.org\/10.1016\/j.gim.2022.100002","relation":{},"ISSN":["1098-3600"],"issn-type":[{"value":"1098-3600","type":"print"}],"subject":[],"published":{"date-parts":[[2023,3]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Parents\u2019 decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project","name":"articletitle","label":"Article Title"},{"value":"Genetics in Medicine","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.gim.2022.100002","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2022 American College of Medical Genetics and Genomics. Published by Elsevier Inc.","name":"copyright","label":"Copyright"}],"article-number":"100002"}}