{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,22]],"date-time":"2025-10-22T02:56:23Z","timestamp":1761101783098},"reference-count":111,"publisher":"Cambridge University Press (CUP)","issue":"4","license":[{"start":{"date-parts":[[2021,1,1]],"date-time":"2021-01-01T00:00:00Z","timestamp":1609459200000},"content-version":"unspecified","delay-in-days":5479,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J. Law. Med. Ethics"],"published-print":{"date-parts":[[2006]]},"abstract":"<jats:p>To promote informed reproductive decisions, prenatal carrier testing is offered to women and couples to provide information about the risk of having a child with one or more genetic conditions. Tay Sachs Disease (TSD) was one of the first conditions for which prenatal carrier testing was developed. Today, many additional conditions can be tested for, depending on prospective parental interest, family history, or ethnicity. Interestingly, most individuals and couples do not request prenatal carrier information prior to conception, and carrier testing early in gestation allows only a narrow set of reproductive options. Programs have been designed to increase preconception testing, with variable success. One of the more successful attempts to increase preconception carrier testing uptake internationally has been to offer it to adolescents in high schools.<\/jats:p>","DOI":"10.1111\/j.1748-720x.2006.00096.x","type":"journal-article","created":{"date-parts":[[2006,11,23]],"date-time":"2006-11-23T08:38:41Z","timestamp":1164271121000},"page":"753-764","source":"Crossref","is-referenced-by-count":18,"title":["Heterozygote Carrier Testing in High Schools Abroad: What are the Lessons for the U.S.?"],"prefix":"10.1017","volume":"34","author":[{"given":"Lainie Friedman","family":"Ross","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2021,1,1]]},"reference":[{"key":"S1073110500009864_ref43","unstructured":"43. See, for example, Gillott, supra note 37; and Wilfond, and Fost, supra note 23."},{"key":"S1073110500009864_ref3","doi-asserted-by":"crossref","first-page":"386","DOI":"10.1034\/j.1399-0004.2003.00074.x","article-title":"\u201cEvaluation of a Tay-Sachs Disease Screening Program,\u201d","volume":"63","author":"Clow","year":"2003","journal-title":"Clinical Genetics"},{"key":"S1073110500009864_ref106","unstructured":"106. Krisher, et al., supra note 101, at 172."},{"key":"S1073110500009864_ref30","unstructured":"30. Zeesman, et al., supra note 25, at 773."},{"key":"S1073110500009864_ref18","unstructured":"18. Scriver, and Clow, supra note 17."},{"key":"S1073110500009864_ref55","unstructured":"55. Barlow-Stewart, et al., supra note 51, at 5."},{"key":"S1073110500009864_ref21","unstructured":"21. Clow, and Scriver, supra note 2, at 89."},{"key":"S1073110500009864_ref63","doi-asserted-by":"publisher","DOI":"10.1159\/000263890"},{"key":"S1073110500009864_ref77","doi-asserted-by":"publisher","DOI":"10.1097\/01.GIM.0000139509.04177.4B"},{"key":"S1073110500009864_ref6","unstructured":"6. Kaback, supra note 1, at 111."},{"key":"S1073110500009864_ref52","unstructured":"52. Barlow-Stewart, et al., supra note 51, at 2."},{"key":"S1073110500009864_ref73","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.303.6801.504"},{"key":"S1073110500009864_ref84","doi-asserted-by":"crossref","first-page":"346","DOI":"10.1017\/S0963180104134063","article-title":"\u201cInformed Consent in Pediatric Research,\u201d","volume":"13","author":"Ross","year":"2004","journal-title":"Cambridge Quarterly of Healthcare Ethics"},{"key":"S1073110500009864_ref4","unstructured":"4. See Kaback, supra note 1, at 108."},{"key":"S1073110500009864_ref9","unstructured":"9. See Kaback, supra note 1, at 113\u2013115."},{"key":"S1073110500009864_ref81","unstructured":"81. See quotes by Kaback, Michael Siegler, Mark and Collins, Francis in Kolata, G. , \u201cNightmare or the Dream of a New Era in Genetics?\u201d The New York Times, December 7, 1993, at A1, C3."},{"key":"S1073110500009864_ref72","unstructured":"72. Vallance, et al., supra note 5."},{"key":"S1073110500009864_ref31","unstructured":"31. Zeesman, et al., supra note 25, at 773."},{"key":"S1073110500009864_ref7","unstructured":"7. See Kaback, supra note 1, at 107."},{"key":"S1073110500009864_ref56","unstructured":"56. Barlow-Stewart, et al., supra note 51, at 5."},{"key":"S1073110500009864_ref95","unstructured":"95. Mitchell, et al., supra note 3, at 541."},{"key":"S1073110500009864_ref86","unstructured":"86. Ross, supra note 84, at 350."},{"key":"S1073110500009864_ref58","unstructured":"58. See, for example, Mitchell, et al., supra note 3; Lena-Russo, et al., supra note 3."},{"key":"S1073110500009864_ref79","unstructured":"79. See, for example, Polnay, et al., supra note 78; Henneman, et al., supra note 78; Brock, supra note 78."},{"key":"S1073110500009864_ref98","unstructured":"98. Durfy, et al., supra note 49, at 152."},{"key":"S1073110500009864_ref92","first-page":"344","article-title":"\u201cStudent Screening for Inherited Blood Disorders in Bahrain,\u201d","volume":"9","author":"Bahrain","year":"2003","journal-title":"Eastern Mediterranean Health Journal"},{"key":"S1073110500009864_ref13","doi-asserted-by":"crossref","unstructured":"13. Ekstein, and Katzenstein, supra note 11, at 303.","DOI":"10.1080\/00797308.1956.11822790"},{"key":"S1073110500009864_ref28","unstructured":"28. Zeesman, et al., supra note 25, at 773."},{"key":"S1073110500009864_ref26","unstructured":"26. Zeesman, et al., supra note 25, at 769."},{"key":"S1073110500009864_ref90","first-page":"216","volume-title":"Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health","author":"Wailoo","year":"2001"},{"key":"S1073110500009864_ref71","first-page":"951","article-title":"\u201cScreening for Five Mutations Detects 97% of Cystic Fibrosis (CF) Chromosomes and Predicts a Carrier Frequency of 1:29 in the Jewish Ashkenazi Population,\u201d","volume":"51","author":"Abeliovich","year":"1992","journal-title":"American Journal of Human Genetics"},{"key":"S1073110500009864_ref104","unstructured":"104. Krisher, et al., supra note 101, at 169."},{"key":"S1073110500009864_ref103","unstructured":"103. Beck, et al., supra note 2."},{"key":"S1073110500009864_ref1","doi-asserted-by":"publisher","DOI":"10.1080\/21548331.1973.11706369"},{"key":"S1073110500009864_ref34","unstructured":"34. Mitchell, et al., supra note 32, at 795."},{"key":"S1073110500009864_ref53","unstructured":"53. Barlow-Stewart, et al., supra note 51, at 5."},{"key":"S1073110500009864_ref93","unstructured":"93. Campbell, and Ross, supra note 37, at 96."},{"key":"S1073110500009864_ref69","unstructured":"69. American College of Obstetricians and Gynecologists (ACOG) and American College of Medical Genetics (ACMG), \u201cPreconception and Prenatal Carrier Screening for Cystic Fibrosis: Clinical and Laboratory Guidelines,\u201d (Washington DC: ACOG, 2001; Bethesda, MD: ACMG, 2001)."},{"key":"S1073110500009864_ref75","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.159.14.1529"},{"key":"S1073110500009864_ref48","doi-asserted-by":"publisher","DOI":"10.1093\/0199273286.003.0010"},{"key":"S1073110500009864_ref45","doi-asserted-by":"crossref","first-page":"185","DOI":"10.1093\/oso\/9780195075564.003.0008","volume-title":"Psychosocial Effects of Screening for Disease Prevention and Detection","author":"Marteau","year":"1995"},{"key":"S1073110500009864_ref66","unstructured":"66. Grosse, et al., supra note 65, at 4\u20135."},{"key":"S1073110500009864_ref105","unstructured":"105. Krisher, et al., supra note 101, at 171."},{"key":"S1073110500009864_ref24","doi-asserted-by":"crossref","first-page":"131","DOI":"10.1542\/peds.59.1.131","article-title":"\u201cGenetic Screening: For Better or for Worse,\u201d","volume":"59","author":"Clow","year":"1977","journal-title":"Pediatrics"},{"key":"S1073110500009864_ref57","unstructured":"57. Barlow-Stewart, et al., supra note 51, at 6."},{"key":"S1073110500009864_ref54","unstructured":"54. Barlow-Stewart, et al., supra note 51, at 5."},{"key":"#cr-split#-S1073110500009864_ref36.1","unstructured":"36. See, for example, American Society of Human Genetics (ASHG)\/American College of Medical Genetics (ACMG), \"Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents,\" American Journal of Human Genetics 57 (1995): 1233-1241, at 1239"},{"key":"#cr-split#-S1073110500009864_ref36.2","doi-asserted-by":"crossref","unstructured":"Working Party of the Clinical Genetics Society (UK), \"The Genetic Testing of Children,\" Journal of Medical Genetics 31 (1995): 785-797 at 785, 786, and 792-3","DOI":"10.1136\/jmg.31.10.785"},{"key":"#cr-split#-S1073110500009864_ref36.3","unstructured":"Committee for Public Relations and Ethical Issues of the German Society of Human Genetics, Statement on Genetic Diagnosis in Children and Adolescents (2000): at 2, available at <http:\/\/www.medgenetik.de\/sonderdruck\/en\/Genetic_diagnosis_in_children.pdf> (last visited September 19, 2006)"},{"key":"#cr-split#-S1073110500009864_ref36.4","doi-asserted-by":"crossref","unstructured":"American Academy of Pediatrics (AAP) Committee on Bioethics, \"Ethical Issues with Genetic Testing in Pediatrics,\" Pediatrics 107 (2001): 1451-5, at 1453","DOI":"10.1542\/peds.107.6.1451"},{"key":"#cr-split#-S1073110500009864_ref36.5","unstructured":"and Institute of Medicine (IOM), Assessing Genetic Risks: Implications for Health and Social Policy (Washington DC: National Academy Press, 1994): at 7, 10, and 102."},{"key":"S1073110500009864_ref2","first-page":"617","article-title":"\u201cLack of Interest by Nonpregnant Couples in Population-Based Cystic Fibrosis Carrier Screening,\u201d","volume":"58","author":"Clayton","year":"1996","journal-title":"American Journal of Human Genetics"},{"key":"S1073110500009864_ref62","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.306.6892.1584"},{"key":"S1073110500009864_ref44","unstructured":"44. See, for example, Mitchell, et al., supra note 32; James, et al., supra note 37; Melancon, and De Braekeleer, supra note 41; and Welkenhuysen, et al., supra note 41."},{"key":"S1073110500009864_ref41","doi-asserted-by":"publisher","DOI":"10.1159\/000472222"},{"key":"S1073110500009864_ref60","unstructured":"60. Mitchell, et al., supra note 32, at 794."},{"key":"S1073110500009864_ref50","first-page":"199","article-title":"\u201cPopulation Screening for Cystic Fibrosis: Knowledge and Emotional Consequences 18 Months Later,\u201d","volume":"120","author":"Lena-Russo","year":"2003","journal-title":"American Journal of Medical Genetics"},{"key":"S1073110500009864_ref70","doi-asserted-by":"publisher","DOI":"10.1038\/nrg1526"},{"key":"S1073110500009864_ref19","unstructured":"19. Clow, and Scriver, supra note 2."},{"key":"S1073110500009864_ref15","unstructured":"15. Edelson, supra note 14, at 130."},{"key":"S1073110500009864_ref10","doi-asserted-by":"publisher","DOI":"10.1007\/PL00014401"},{"key":"S1073110500009864_ref67","unstructured":"67. Grosse, et al., supra note 65, at 3\u20134."},{"key":"S1073110500009864_ref64","doi-asserted-by":"publisher","DOI":"10.2307\/3562682"},{"key":"S1073110500009864_ref59","unstructured":"59. Barlow-Stewart, et al., supra note 51, at 7."},{"key":"S1073110500009864_ref78","doi-asserted-by":"publisher","DOI":"10.1136\/adc.87.4.284"},{"key":"S1073110500009864_ref38","unstructured":"38. See, for example, Brunger, et al., supra note 37, James, et al., supra note 37, and McConkie-Rosell, et al., supra note 37."},{"key":"S1073110500009864_ref97","unstructured":"97. Durfy, et al., supra note 49, at 141."},{"key":"S1073110500009864_ref102","unstructured":"102. D'Souza, et al., supra note 101, at 258."},{"key":"S1073110500009864_ref47","first-page":"107","volume-title":"Genetics, Society and Clinical Practice","author":"Clarke","year":"1997"},{"key":"S1073110500009864_ref42","doi-asserted-by":"crossref","first-page":"384","DOI":"10.1038\/sj.ejhg.5201581","article-title":"\u201cIt's \u2018Back to School\u2019 for Genetic Screening,\u201d","volume":"14","author":"Clow","year":"2006","journal-title":"European Journal of Human Genetics"},{"key":"S1073110500009864_ref12","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1586\/14737159.4.3.377","article-title":"\u201cDNA-Based Carrier Screening in the Ashkenazi Jewish Population,\u201d","volume":"4","author":"Ekstein","year":"2004","journal-title":"Expert Review of Molecular Diagnostics"},{"key":"S1073110500009864_ref80","doi-asserted-by":"publisher","DOI":"10.1089\/gte.1998.2.271"},{"key":"S1073110500009864_ref74","doi-asserted-by":"publisher","DOI":"10.1089\/gte.1997.1.53"},{"key":"S1073110500009864_ref5","doi-asserted-by":"crossref","first-page":"473","DOI":"10.1080\/10408360390247832","article-title":"\u201cCarrier Testing for Autosomal Recessive Disorders,\u201d","volume":"40","author":"Vallance","year":"2003","journal-title":"Critical Reviews in Clinical Laboratory Sciences"},{"key":"S1073110500009864_ref46","unstructured":"46. See, for example, Beck, et al., supra note 2."},{"key":"S1073110500009864_ref27","unstructured":"27. Zeesman, et al., supra note 25, at 772."},{"key":"S1073110500009864_ref89","unstructured":"89. This is summarized in Ross, supra note 48, at 160\u2013162."},{"key":"S1073110500009864_ref101","doi-asserted-by":"publisher","DOI":"10.1089\/10906570050501470"},{"key":"S1073110500009864_ref17","first-page":"379","article-title":"\u201cCompliance Factors in Tay-Sachs Screening,\u201d","volume":"18","author":"Scriver","year":"1977","journal-title":"Progress in Clinical and Biological Research"},{"key":"S1073110500009864_ref37","first-page":"341","article-title":"\u201cAttitudes towards Carrier Testing in Minors: A Systematic Review,\u201d","volume":"16","author":"Borry","year":"2005","journal-title":"Genetic Counseling"},{"key":"S1073110500009864_ref14","first-page":"125","article-title":"\u201cThe Tay-Sachs Disease Screening Program in the U.S. as a Model for the Control of Genetic Disease: An Historical View,\u201d","volume":"7","author":"Edelson","year":"1997","journal-title":"Health Matrix"},{"key":"S1073110500009864_ref91","doi-asserted-by":"publisher","DOI":"10.1007\/BF02639319"},{"key":"S1073110500009864_ref61","unstructured":"61. Mitchell, et al., supra note 32, at 795. The French Canadian adolescents would not have been identified in these screening programs because the programs were only implemented in English speaking high schools with a high percentage of Ashkenazi Jewish students. Given the changing geographical demographics of the Ashkenazi Jewish community in Montreal, a similar program today would require wider implementation."},{"key":"S1073110500009864_ref51","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.40.4.e45"},{"key":"S1073110500009864_ref85","doi-asserted-by":"publisher","DOI":"10.1016\/1054-139X(95)00181-Q"},{"key":"S1073110500009864_ref32","first-page":"793","article-title":"\u201cTwenty-Year Outcome Analysis of Genetic Screening Programs for Tay-Sachs and Beta-Thalassemia Disease Carriers in High Schools,\u201d","volume":"59","author":"Mitchell","year":"1996","journal-title":"American Journal of Human Genetics"},{"key":"S1073110500009864_ref76","unstructured":"76. ACOG\/ACMG, supra note 69."},{"key":"S1073110500009864_ref87","unstructured":"87. Ross, supra note 84, at 350\u20132."},{"key":"S1073110500009864_ref25","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320180424"},{"key":"S1073110500009864_ref40","unstructured":"40. See, for example, Balfour-Lynn, et al., supra note 37; and Campbell, and Ross, supra note 37."},{"key":"S1073110500009864_ref68","unstructured":"68. Kaback, supra note 10, at S194."},{"key":"S1073110500009864_ref107","unstructured":"107. Krisher, et al., supra note 101, at 173\u2013174."},{"key":"S1073110500009864_ref33","unstructured":"33. Mitchell, et al., supra note 32, at 795."},{"key":"S1073110500009864_ref65","first-page":"1","article-title":"\u201cNewborn Screening for Cystic Fibrosis: Evaluation of Benefits and Risks and Recommendations for State Newborn Screening Programs,\u201d","volume":"53","author":"Grosse","year":"2004","journal-title":"Morbidity and Mortality Weekly Report, Recommendations and Reports"},{"key":"S1073110500009864_ref11","doi-asserted-by":"publisher","DOI":"10.1016\/S0065-2660(01)44087-9"},{"key":"S1073110500009864_ref83","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201581"},{"key":"S1073110500009864_ref99","doi-asserted-by":"crossref","first-page":"166","DOI":"10.1111\/j.1399-0004.2004.00389.x","article-title":"\u201cGenetic Susceptibility Screening in Schools: Attitudes of the School Community towards Hereditary Haemochromatosis,\u201d","volume":"67","author":"Durfy","year":"2005","journal-title":"Clinical Genetics"},{"key":"S1073110500009864_ref29","unstructured":"29. Zeesman, et al., supra note 25, at 773."},{"key":"S1073110500009864_ref20","unstructured":"20. Clow, and Scriver, supra note 2, at 89."},{"key":"S1073110500009864_ref22","unstructured":"22. Clow, and Scriver, supra note 2, at 89."},{"key":"S1073110500009864_ref49","doi-asserted-by":"publisher","DOI":"10.1007\/BF01423176"},{"key":"S1073110500009864_ref94","first-page":"240","article-title":"\u201cCystic Fibrosis Carrier Screening by DNA Analysis: A Pilot Study of Attitudes among Participants,\u201d","volume":"49","author":"Kaplan","year":"1991","journal-title":"American Journal of Human Genetics"},{"key":"S1073110500009864_ref100","unstructured":"100. Beck, et al., supra note 2."},{"key":"S1073110500009864_ref39","unstructured":"39. See, for example, Borry, et al., supra note 37; Fanos, supra note 37; and Lavery, supra note 37."},{"key":"S1073110500009864_ref96","unstructured":"96. Kaplan, et al., supra note 94, at 240."},{"key":"S1073110500009864_ref88","unstructured":"88. The Protection of Pupil Rights Amendment (PPRA), also known as the Hatch amendment, was originally passed in 1994. PPRA, 20 U.S.C. 1232h (1994) 34 CFR Part 98. Available at <http:\/\/www.ed.gov\/policy\/gen\/guid\/fpco\/ppra\/index.html> (last visited September 19, 2006). It was revised under the No Child Left Behind Act of 2001, 20 U.S.C. 6301 et seq. (2002)."},{"key":"S1073110500009864_ref82","unstructured":"82. Holtzman, supra note 24, at 132."},{"key":"S1073110500009864_ref35","doi-asserted-by":"publisher","DOI":"10.1001\/jama.1993.03510190063028"},{"key":"S1073110500009864_ref16","unstructured":"16. Beck, et al., supra note 2, at 1167."},{"key":"S1073110500009864_ref23","doi-asserted-by":"crossref","first-page":"1116","DOI":"10.2105\/AJPH.68.11.1116","article-title":"\u201cStigmatization of Carrier Satus: Social Implications of Heterozygote Genetic Screening Programs,\u201d","volume":"68","author":"Kenen","year":"1978","journal-title":"American Journal of Public Health"},{"key":"S1073110500009864_ref8","unstructured":"8. See Kaback, supra note 1, at 107."}],"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.2006.00096.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/journals.sagepub.com\/doi\/pdf\/10.1111\/j.1748-720X.2006.00096.x","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1073110500009864","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,8]],"date-time":"2024-02-08T12:41:42Z","timestamp":1707396102000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1073110500009864\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2006]]},"references-count":111,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2006]]}},"alternative-id":["S1073110500009864"],"URL":"https:\/\/doi.org\/10.1111\/j.1748-720x.2006.00096.x","relation":{},"ISSN":["1073-1105","1748-720X"],"issn-type":[{"value":"1073-1105","type":"print"},{"value":"1748-720X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2006]]}}}