{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,28]],"date-time":"2025-11-28T12:10:59Z","timestamp":1764331859239},"reference-count":30,"publisher":"Cambridge University Press (CUP)","issue":"3","license":[{"start":{"date-parts":[[2021,1,1]],"date-time":"2021-01-01T00:00:00Z","timestamp":1609459200000},"content-version":"unspecified","delay-in-days":3775,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J. Law. Med. Ethics"],"published-print":{"date-parts":[[2010,9]]},"abstract":"<jats:p>Parents, providers, policy makers, and the public need to talk about the implications of advances in genomic technologies for state run newborn metabolic screening programs. Technologies, such as highly multiplex testing and whole genome sequencing, are raising old issues with new urgency and are posing new challenges that threaten to overwhelm newborn screening programs.<\/jats:p><jats:p>Newborn screening programs in their current form were born in the late 1960s. Robert Guthrie developed a screening test for phenylketonuria (PKU) that could be performed on blood spots collected on filter cards that Guthrie also developed. States rapidly established newborn screening programs, which were almost always mandatory, in response to advocacy by geneticists and parents. Although the programs initially varied in form and experienced significant pushback from the medical community, by the early 1970s, all states had established programs with centralized laboratories, and the medical community had come on board.<\/jats:p>","DOI":"10.1111\/j.1748-720x.2010.00522.x","type":"journal-article","created":{"date-parts":[[2010,9,29]],"date-time":"2010-09-29T17:19:14Z","timestamp":1285780754000},"page":"697-700","source":"Crossref","is-referenced-by-count":20,"title":["Currents in Contemporary Ethics"],"prefix":"10.1017","volume":"38","author":[{"given":"Ellen Wright","family":"Clayton","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2021,1,1]]},"reference":[{"key":"S1073110500017447_bib24","unstructured":"24. Beleno v. Lakey, SA-09-CA-188-FB, (U.S. Dist.Ct., W.D. Tex. 9\/17\/2009), available at <http:\/\/www.genomicslawreport.com\/wp-content\/uploads\/2010\/01\/Beleno-order.pdf> (order regarding defendants' motion to dismiss and defendants' motion to dismiss or for summary judgment based on mootness) (last visited August 10, 2010)."},{"key":"S1073110500017447_bib10","unstructured":"10. American College of Medical Genetics, \u201cNewborn Screening: Toward a Uniform Screening Panel and System: Report for Public Comment,\u201d available at <http:\/\/www.mchb.hrsa.gov\/screening\/> (last visited August 10, 2010)."},{"key":"S1073110500017447_bib16","volume-title":"Genetic Screening: From Newborns to DNA Typing: Proceedings of the Workshop on Genetic Screening Held, at La. Sapini\u00e8re, Qu\u00e9bec (Canada) 13th-14th October 1989 for the Bi-Annual Meeting between the Quebec Network of Genetic Medicine and the New England. Regional Screening Program, with a Special Invitation Extended to L'association Fran\u00e7aise De Pr\u00e9vention Des Handicaps De L'enfant","author":"Maria Knoppers","year":"1990"},{"key":"S1073110500017447_bib27","unstructured":"27. Minn.Stat.Ann. \u00a7\u00a7 144.125\u20138 (2010)."},{"key":"S1073110500017447_bib28","unstructured":"28. 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New York's Experience,\u201d","volume":"83","author":"Diaz-Barrios","year":"1989","journal-title":"Pediatrics"},{"key":"S1073110500017447_bib13","first-page":"125","volume-title":"Ethics and Newborn Genetic Screening: New Technologies, New Challenges","author":"Clayton","year":"2009"},{"key":"S1073110500017447_bib8","unstructured":"8. National Newborn Screening and Genetics Resource Center, \u201cGenetic and Newborn Screening Resource Center of the United States,\u201d available at <http:\/\/genes-r-us.uthscsa.edu\/> (last visited August 10, 2010)."},{"key":"S1073110500017447_bib30","volume-title":"The Language of Life: DNA and the Revolution in Personalized Medicine","author":"Collins","year":"2010"},{"key":"S1073110500017447_bib29","unstructured":"29. Department of Health and Human Services, \u201cHealth Information Technology for the Future of Health and Care,\u201d available at <http:\/\/healthit.hhs.gov\/portal\/server.pt> (last visited August 10, 2010)."},{"key":"S1073110500017447_bib12","unstructured":"12. See, e.g., Save Babies Through Screening Foundation, Inc. \u201cNewborn Screening Saves Babies One Foot at a Time,\u201d available at <http:\/\/www.savebabies.org\/> (last visited August 10, 2010)."},{"key":"S1073110500017447_bib6","doi-asserted-by":"crossref","first-page":"439","DOI":"10.1007\/s10545-007-0666-z","article-title":"\u201cExpanded Newborn Screening in Europe 2007,\u201d","volume":"30","author":"Bodamer","year":"2010","journal-title":"Journal, of Inherited Metabolic Disease"},{"key":"S1073110500017447_bib2","doi-asserted-by":"crossref","first-page":"S4","DOI":"10.1007\/PL00014247","article-title":"\u201cThe Introduction of Newborn Screening for Phenylketonuria: A Personal History,\u201d","volume":"155","author":"Guthrie","year":"1996","journal-title":"European Journal of Pediatrics"},{"key":"S1073110500017447_bib25","unstructured":"25. Root, J. , \u201cTexas Officials Agree to Destroy Babies' Blood Samples after Settling Lawsuit,\u201d Dallas Morning News, available at <http:\/\/www.texascivilrightsproject.org\/?p=1822> (last visited August 10, 2010)."},{"key":"S1073110500017447_bib26","unstructured":"26. Bearder v. State of Minnesota, 27-CV-09-5615, (Dist. Ct., Hennepin Cty, MN, 11\/24\/2009), available at <http:\/\/www.workplaceprivacyreport.com\/uploads\/file\/Bearder%20Decision%281%29-pdf> (order granting motion to dismiss) (last visited August 10, 2010)."},{"key":"S1073110500017447_bib17","unstructured":"17. U.S. Department of Health and Human Services, and Health Resources and Services Administration, \u201cSecretary's Advisory Committee on Heritable Disorders in Newborns and Children,\u201d available at <http:\/\/www.hrsa.gov\/heritabledisorderscommittee\/> (last visited August 10, 2010)."},{"key":"S1073110500017447_bib19","first-page":"58","volume-title":"Ethics and Newborn Screening: New Technologies, New Challenges","author":"Cody","year":"2009"},{"key":"S1073110500017447_bib15","doi-asserted-by":"crossref","first-page":"505","DOI":"10.3928\/0090-4481-20030801-07","article-title":"\u201cLessons from the Past \u2013 Looking to the Future: Newborn Screening,\u201d","volume":"32","author":"Levy","year":"2003","journal-title":"Pediatric Annals"},{"key":"S1073110500017447_bib21","unstructured":"21. Pollack, A. , \u201cConsumers Slow to Embrace the Age of Genomics,\u201d New York Times, March 20, 2010, at B1."},{"key":"S1073110500017447_bib22","unstructured":"22. US Food and Drug Administration, \u201cLetters to Industry,\u201d available at <http:\/\/www.fda.gov\/MedicalDevices\/ResourcesforYou\/Industry\/ucm111104.htm> (last visited August 10, 2010)."},{"key":"S1073110500017447_bib20","unstructured":"20. Genetics and Public Policy Center, \u201cDTC Genetic Testing Companies,\u201d available at <http:\/\/www.dnapolicy.org\/resources\/AlphabetizedDTCGeneticTestingCompanies.pdf> (last visited August 10, 2010)."},{"key":"S1073110500017447_bib5","doi-asserted-by":"crossref","first-page":"F467","DOI":"10.1136\/fn.88.6.F467","article-title":"\u201cImplications of Carrier Identification in Newborn Screening for Cystic Fibrosis,\u201d","volume":"88","author":"Parsons","year":"2003","journal-title":"Archives of Diseases of Child. Fetal Neonatal Education"},{"key":"S1073110500017447_bib18","volume-title":"The Language of Life: DNA and the Revolution in Personalized Medicine","author":"Collins","year":"2010"},{"key":"S1073110500017447_bib9","doi-asserted-by":"crossref","first-page":"32","DOI":"10.1353\/hcr.0.0011","article-title":"\u201cExpanding Newborn Screening: Process, Policy, and Priorities,\u201d","volume":"38","author":"Moyer","year":"2008","journal-title":"Hastings Cent Rep"},{"key":"S1073110500017447_bib7","first-page":"122","article-title":"\u201cA Public Health Response to Emerging Technology: Expansion of the Massachusetts Newborn Screening Program,\u201d","volume":"116","author":"Atkinson","year":"2001","journal-title":"Public Health Reports"},{"key":"S1073110500017447_bib11","doi-asserted-by":"crossref","first-page":"1793","DOI":"10.1542\/peds.2005-2547","article-title":"\u201cNewborn Screening Technology: Proceed with Caution,\u201d","volume":"117","author":"Botkin","year":"2006","journal-title":"Pediatrics"},{"key":"S1073110500017447_bib3","volume-title":"\u201cPrinciples and Practice of Screening Fro Disease,\u201d","author":"Wilson","year":"2010"},{"key":"S1073110500017447_bib23","first-page":"1451","article-title":"\u201cShould We Test Children for \u201cAdult\u201d Genetic Diseases?\u201d","volume":"335","author":"Harper","year":"2001","journal-title":"The Lancet"}],"container-title":["Journal of Law, Medicine &amp; Ethics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fj.1748-720X.2010.00522.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/journals.sagepub.com\/doi\/pdf\/10.1111\/j.1748-720X.2010.00522.x","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1073110500017447","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,6,3]],"date-time":"2023-06-03T14:52:23Z","timestamp":1685803943000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1073110500017447\/type\/journal_article"}},"subtitle":["State Run Newborn Screening in the Genomic Era, or How to Avoid Drowning When Drinking from a Fire Hose"],"short-title":[],"issued":{"date-parts":[[2010,9]]},"references-count":30,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2010]]}},"alternative-id":["S1073110500017447"],"URL":"https:\/\/doi.org\/10.1111\/j.1748-720x.2010.00522.x","relation":{},"ISSN":["1073-1105","1748-720X"],"issn-type":[{"value":"1073-1105","type":"print"},{"value":"1748-720X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2010,9]]}}}