Heterozygote Carrier Testing in High Schools Abroad: What are the Lessons for the U.S.?

Kaback M. M. and O'Brien J. S. , “Tay-Sachs: Prototype for Prevention of Genetic Disease,” Hospital Practice 8 (March 1973): 107–116.

See, for example, Clayton E. W. Hannig V. L. Pfotenhauer J. P. Parker R. A. Campbell P. W. III , and Phillips J. A. III , “Lack of Interest by Nonpregnant Couples in Population-Based Cystic Fibrosis Carrier Screening,” American Journal of Human Genetics 58 (1996): 617–27; Payne Y. Williams M. Cheadle J. Stott N. C. Rowlands M. Shickle D. , for the South Wales Cystic Fibrosis Carrier Screening Research Team, “Carrier Screening for Cystic Fibrosis in Primary Care: Evaluation of a Project in South Wales,” Clinical Genetics 51 (1997): 153–63; Bekker H. Modell M. Denniss G. Silver A. Mathew C. Bobrow M. , and Marteau T. , “Uptake of Cystic Fibrosis Testing in Primary Care: Supply Push or Demand Pull?” British Medical Journal 306 (1993): 1584–6; Tambor E. S. Bernhardt B. A. Chase G. A. Faden R. R. Geller G. Hofman K. J. , and Holtzman N. A. , “Offering Cystic Fibrosis Carrier Screening to an HMO Population: Factors Associated with Utilization,” American Journal of Human Genetics 55 (1994): 626–37; Lowden J. A. Zuker S. Wilensky A. J. , and Skomorowski M. A. , “Screening for Carriers of Tay-Sachs Disease: A Community Project,” Canadian Medical Association Journal 111 (1974): 229–33; Beck E. Blaichman S. Scriver C. R. , and Clow C. L. , “Advocacy and Compliance in Genetic Screening: Behavior of Physicians and Clients in a Voluntary Program of Testing for the Tay-Sachs Gene,” N. Engl. J. Med. 291 (1974): 1166–70; and Clow C. L. and Scriver C. R. , “Knowledge about and Attitudes toward Genetic Screening among High-School Students: The Tay-Sachs Experience,” Pediatrics 59 (1977): 86–90.

In this manuscript I will focus primarily on Tay-Sachs screening programs in schools; and cystic fibrosis when it is bundled into testing for Tay-Sachs. See, for example, Clow and Scriver , supra note 2; Gason A. A. Sheffield E. Bankier A. Aitken M. A. Metcalfe S. Barlow-Stewart K. , and Delatycki M. B. , “Evaluation of a Tay-Sachs Disease Screening Program,” Clinical Genetics 63 (2003): 386–92. There have been programs to test for cystic fibrosis alone. See, for example, Mitchell J. Scriver C. R. Clow C. L. , and Kaplan F. , “What Young People Think and Do when the Option for Cystic Fibrosis Carrier Testing is Available,” Journal of Medical Genetics 30 (1993): 538–42. Other school-based programs for carrier screening for hemoglobinopathies have also been developed. See, for example, Lau Y. L. Chan L. C. Chan Y. Y. Ha S. Y. Yeung C. Y. Waye J. S. , and Chui D. H. , “Prevalence and Genotypes of Alpha-and Beta-Thalassemia Carriers in Hong Kong – Implications for Population Screening,” N. Engl. J. Med. 336 (1997): 1298–301; and Lena-Russo D. Badens C. Aubinaud M. Merono F. Paolasso C. Martini N. , and Mattei J. F. , “Outcome of a School Screening Programme for Carriers of Haemoglobin Disease,” Journal of Medical Screening 9 (2002): 67–9; and Silvestroni E. Bianco I. Gra-Ziani B. Carboni C. , and D'Arca S.U. , “First Premarital Screening of Thalassaemia Carriers in Intermediate Schools in Latium,” Journal of Medical Genetics 15 (1978): 202–207. These latter programs will not be discussed further.

See Kaback , supra note 1, at 108.

Vallance H. and Ford J. , “Carrier Testing for Autosomal Recessive Disorders,” Critical Reviews in Clinical Laboratory Sciences 40 (2003): 473–497 at 476–7.

Kaback , supra note 1, at 111.

See Kaback , supra note 1, at 107.

See Kaback , supra note 1, at 107.

See Kaback , supra note 1, at 113–115.

Kaback M. M. , “Population-Based Genetic Screening for Reproductive Counseling: The Tay-Sachs Disease Model,” European Journal of Pediatrics 159, Supplement 3 (2000): S192–5, at S193.

Ekstein J. , and Katzenstein H. , “The Dor Yeshorim Story: Community-Based Carrier Screening for Tay-Sachs Disease,” Advances in Genetics 44 (2001): 297–310, at 301–2.

Ekstein and Katzenstein , supra note 9, at 305. For a list of conditions and the incidence of these conditions, see Zhang B. Dearing L. , and Amos J. , “DNA-Based Carrier Screening in the Ashkenazi Jewish Population,” Expert Review of Molecular Diagnostics 4 (2004): 377–392, at 379.

Ekstein and Katzenstein , supra note 11, at 303.

Edelson P. J. , “The Tay-Sachs Disease Screening Program in the U.S. as a Model for the Control of Genetic Disease: An Historical View,” Health Matrix 7 (1997): 125–33, at 129–130, citing Scriver C. R. and Gold R. J. M. , “Tay Sachs Heterozygote Screening: Specificity and Sensitivity,” in Kaback M. M. Rimoin D. L. , and Kaback J. S. , eds., Tay Sachs Disease: Screening and Prevention (New York: A. R. Liss, 1977): 239–43.

Edelson , supra note 14, at 130.

Beck , supra note 2, at 1167.

Scriver C. R. and Clow C. L. , “Compliance Factors in Tay-Sachs Screening,” Progress in Clinical & Biological Research 18 (1977): 379–80.

Scriver and Clow , supra note 17.

Clow and Scriver , supra note 2.

Clow and Scriver , supra note 2, at 89.

Clow and Scriver , supra note 2, at 89.

Clow and Scriver , supra note 2, at 89.

See, for example, Kenen R. H. and Schmidt R. M. , “Stigmatization of Carrier Satus: Social Implications of Heterozygote Genetic Screening Programs,” American Journal of Public Health 68 (1978): 1116–1120; Evers-Kiebooms G. Denayer L. Welkenhuysen M. Cassiman J. J. , and Van den Berghe H. , “A Stigmatizing Effect of the Carrier Status for Cystic Fibrosis?” Clinical Genetics 46 (1994): 336–43; and Wilfond B. S. and Fost N. , “The Cystic Fibrosis Gene: Medical and Social Implications for Heterozygote Detection,” JAMA 263 (1990): 2777–83, at 2781–2.

See Clow and Scriver , supra note 2, at 89. See also, Holtzman N. A. , “Genetic Screening: For Better or for Worse,” Pediatrics 59 (1977): 131–3.

Zeesman S. Clow C. L. Cartier L. , and Scriver C. R. , “A Private View of Heterozygosity: Eight-Year Follow-up Study on Carriers of the Tay-Sachs Gene Detected by High School Screening in Montreal,” American Journal of Medical Genetics 18 (1984): 769–78.

Zeesman , supra note 25, at 769.

Zeesman , supra note 25, at 772.

Zeesman , supra note 25, at 773.

Zeesman , supra note 25, at 773.

Zeesman , supra note 25, at 773.

Zeesman , supra note 25, at 773.

Mitchell J. J. Capua A. Clow C. , and Scriver C. R. , “Twenty-Year Outcome Analysis of Genetic Screening Programs for Tay-Sachs and Beta-Thalassemia Disease Carriers in High Schools,” American Journal of Human Genetics 59 (1996): 793–8.

Mitchell , supra note 32, at 795.

Mitchell , supra note 32, at 795.

Kaback M. Lim-Steele J. Dabholkar D. Brown D. , N. Levy, and K. Zeiger for the International TSD Data Collection Network, “Tay-Sachs Disease – Carrier Screening, Prenatal Diagnosis, and the Molecular Era: An International Perspective, 1970 to 1993,” JAMA 270 (1993): 2307–15, at 2310.

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; 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; 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); American Academy of Pediatrics (AAP) Committee on Bioethics, “Ethical Issues with Genetic Testing in Pediatrics,” Pediatrics 107 (2001): 1451–5, at 1453; 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.

See, for example, Borry P. Fryns J. P. Schotsmans P. , and Dierickx K. , “Attitudes towards Carrier Testing in Minors: A Systematic Review,” Genetic Counseling 16 (2005): 341–52; Balfour-Lynn I. Madge S. , and Dinwiddie R. , “Testing Carrier Status in Siblings of Patients with Cystic Fibrosis,” Archives of Disease in Childhood 72 (1995): 167–8; Dalby S. , “GIG Genetic Interest Group Response to the UK Clinical Genetics Society Report ‘The Genetic Testing of Children’,” Journal of Medical Genetics 32 (1995): 490–492; Fanos J. H. , “Developmental Tasks of Childhood and Adolescence: Implications for Genetic Testing,” American Journal of Medical Genetics 71 (1997): 22–8; Lavery C. , “On the Receiving End of Genetic Medicine,” in Clarke A. , ed., The Genetic Testing of Children (Oxford, UK: Bios Scientific Publishers, 1998): 47–50; Gillott J. , “Childhood Testing for Carrier Status: The Perspective of the Genetics Interest Group,” in Clarke A. , ed., The Genetic Testing of Children (Oxford, UK: Bios Scientific Publishers, 1998): 97–102; and Jolly A. Parsons E. and Clarke A. “Identifying Carriers of Balanced Chromosomal Translocations: Interviews with Family Members,” in Clarke A. , ed., The Genetic Testing of Children (Oxford UK: Bios Scientific Publishers, 1998): 61–90; Jarvinen O. Lehesjoki A. E. Lindlof M. Uutela A. , and Kaariainen H. , “Carrier Testing of Children for Two X-Linked Diseases: A Retrospective Evaluation of Experience and Satisfaction of Subjects and their Mothers,” Genetic Testing 3 (1999): 347–55; McConkie-Rosell A. Spiridigliozzi G. A. Rounds K. Dawson D. V. Sullivan J. A. Burgess D. , and Lachiewicz A. M. , “Parental Attitudes Regarding Carrier Testing in Children at Risk for Fragile X Syndrome,” American Journal of Medical Genetics 82 (1999): 206–11; Brunger J. W. Murray G. S. O'Riordan M. Matthews A. L. Smith R. J. , and Robin N. H. , “Parental Attitudes toward Genetic Testing for Pediatric Deafness,” American Journal of Human Genetics 67 (2000): 1621–5; James C. A. Holtzman N. A. , and Hadley D. W. , “Perceptions of Reproductive Risk and Carrier Testing among Adolescent Sisters of Males with Chronic Granulomatous Disease,” American Journal of Medical Genetics Part C, Seminars in Medical Genetics 119 (2003): 60–9; and Campbell E. , and Ross L. F. , “Parental Attitudes and Beliefs Regarding the Genetic Testing of Children,” Community Genetics 8 (2005): 94–102.

See, for example, Brunger , supra note 37, James , supra note 37, and McConkie-Rosell , supra note 37.

See, for example, Borry , supra note 37; Fanos , supra note 37; and Lavery , supra note 37.

See, for example, Balfour-Lynn , supra note 37; and Campbell and Ross , supra note 37.

See, for example, Melancon M. J. and De Braekeleer M. , “Adolescents' Attitude towards Carrier Testing for Cystic Fibrosis,” European Journal of Human Genetics 4 (1996): 305–6; and Welkenhuysen M. Evers-Kiebooms G. Decruyenaere M. Van den Berghe H. Bande-Knops J. , and Van Gerven V. , “Adolescents' Attitude towards Carrier Testing for Cystic Fibrosis and its Relative Stability over Time,” European Journal of Human Genetics 4 (1996): 52–62.

See, for example, Clow and Scriver , supra note 3, Lena-Russo , supra note 3; Welkenhuysen , supra note 41; and Gason A. A. Delatycki M. B. Metcalfe S. A. , and Aitken M. A. , “It's ‘Back to School’ for Genetic Screening,” European Journal of Human Genetics 14 (2006): 384–9.

See, for example, Gillott , supra note 37; and Wilfond and Fost , supra note 23.

See, for example, Mitchell , supra note 32; James , supra note 37; Melancon and De Braekeleer , supra note 41; and Welkenhuysen , supra note 41.

See, for example, Marteau T. M. , “Toward an Understanding of the Psychological Consequences of Screening,” in Croyle R. T. , ed., Psychosocial Effects of Screening for Disease Prevention and Detection (New York: Oxford University Press, 1995): 185–199; and Senior V. Marteau T. M. , and Peters T. J. , “Will Genetic Testing for Predisposition for Disease Result in Fatalism? A Qualitative Study of Parents' Responses to Neonatal Screening for Familial Hypercholesterolaemia,” Social Science and Medicine 48 (1999): 1857–1860.

See, for example, Beck , supra note 2.

Clarke A. J. , “Newborn Screening,” in Harper P. S. and Clarke A. J. , Genetics, Society and Clinical Practice (Oxford UK: Bios Scientific Publishers, 1997): 107–117, at 115.

Similar issues are raised when researchers seek to enroll students in medical research. See, Ross L. F. , Children in Medical Research: Access versus Protection (Oxford UK: Oxford University Press, 2006): 154–170, Chapter 9, “Research in Schools”.

See, for example, Durfy S. J. Page A. Eng B. Chang P. L. , and Waye J. S. , “Attitudes of High School Students toward Carrier Screening and Prenatal Diagnosis of Cystic Fibrosis,” Journal of Genetic Counseling 3 (1994): 141–55.

See, for example, Lena-Russo , supra note 3; Mitchell , supra note 32; Melancon and De Braekeleer , supra note 41; Gordon C. Walpole I. Zubrick S. R. , and Bower C. , “Population Screening for Cystic Fibrosis: Knowledge and Emotional Consequences 18 Months Later,” American Journal of Medical Genetics 120, Part A (2003): 199–208; and Jarvinen O. and Kaariainen H. , “A Retrospective Study of Genetic Carrier Testing in Childhood,” in Clarke A. , ed., The Genetic Testing of Children (Oxford UK: Bios Scientific Publishers, 1998): 91–96.

Barlow-Stewart K. Burnett L. Proos A. Howell V. Huq F. Lazarus R. , and Aizenberg H. , “A Genetic Screening Programme for Tay-Sachs Disease and Cystic Fibrosis for Australian Jewish High School Students,” Journal of Medical Genetics 40, no.4 (2003): e45. Available at <http://www.jmedgenet.com/cgi/content/full/40/4/e45> (last visited September 19, 2006).

Barlow-Stewart , supra note 51, at 2.

Barlow-Stewart , supra note 51, at 5.

Barlow-Stewart , supra note 51, at 5.

Barlow-Stewart , supra note 51, at 5.

Barlow-Stewart , supra note 51, at 5.

Barlow-Stewart , supra note 51, at 6.

See, for example, Mitchell , supra note 3; Lena-Russo , supra note 3.

Barlow-Stewart , supra note 51, at 7.

Mitchell , supra note 32, at 794.

Mitchell , 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.

The concern about whether high uptake in genetic screening programs reflect supply push or demand pull exists for carrier detection programs as well as newborn screening programs. For carrier detection programs, see, for example, Bekker H. Modell M. Denniss G. Silver A. Mathew C. Bobrow M , and Marteau T. , “Uptake of Cystic Fibrosis Testing in Primary Care: Supply Push or Demand Pull?” British Medical Journal 306 (1993): 1584–6. For the concern in newborn screening programs, see, for example, Clarke , supra note 47.

See, for example, Holtzman N. A. , “Primary Care Physicians as Providers of Frontline Genetic Services,” Fetal Diagnosis & Therapy 8, Supplement 1 (1993): 213–9.

See, for example, Steinbrook R. , “In California, Voluntary Mass Prenatal Screening,” Hastings Center Report 16, no. 5 (1986): 5–7.

Grosse S. D. Boyle C. A. Botkin J. R. Comeau A. M. Kharrazi M. Rosenfeld M. , and Wilfond B. S. , “Newborn Screening for Cystic Fibrosis: Evaluation of Benefits and Risks and Recommendations for State Newborn Screening Programs,” Morbidity & Mortality Weekly Report, Recommendations & Reports 53, no. RR-13 (2004): 1–36, at 3. Available at <http://www.cdc.gov/mmwr/PDF/rr/rr5313.pdf> (last visited September 19, 2006).

Grosse , supra note 65, at 4–5.

Grosse , supra note 65, at 3–4.

Kaback , supra note 10, at S194.

American College of Obstetricians and Gynecologists (ACOG) and American College of Medical Genetics (ACMG), “Preconception and Prenatal Carrier Screening for Cystic Fibrosis: Clinical and Laboratory Guidelines,” (Washington DC: ACOG, 2001; Bethesda, MD: ACMG, 2001).

Green N. S. and Pass K. A. , “Neonatal Screening by DNA Micro-array: Spots and Chips,” Nature Reviews Genetics 6 (2005): 147–152, at 149 (citations omitted); and Monaghan K. G. Bluhm D. Phillips M. , and Feldman G. L. , “Preconception and Prenatal Cystic Fibrosis Carrier Screening of African-Americans reveals Unanticipated Frequencies for Specific Mutations,” Genetics in Medicine 6 (2004): 141–4.

Abeliovich D. Lavon I. P. Lerer I. Cohen T. Springer C. Avital A. , and Cutting G. R. , “Screening for Five Mutations Detects 97% of Cystic Fibrosis (CF) Chromosomes and Predicts a Carrier Frequency of 1:29 in the Jewish Ashkenazi Population,” American Journal of Human Genetics 51 (1992): 951–6.

Vallance , supra note 5.

Watson E. K. Mayall E. Chapple J. Dalziel M. Harrington K. Williams C. , and Williamson R. , “Screening for Carriers of Cystic Fibrosis through Primary Health Care Services,” British Medical Journal 303 (1991): 504–7.

Rowley P. T. Loader S. , and Levenkron J. C. , “Cystic Fibrosis Carrier Population Screening: A Review,” Genetic Testing 1 (1997): 53–9; Harris H. Scotcher D. Hartley N. Wallace A. Craufurd D. , and Harris R. , “Pilot Study of the Acceptability of Cystic Fibrosis Carrier Testing During Routine Antenatal Consultations in General Practice,” British Journal of General Practice 46 (1996): 225–7.

National Institutes of Health Consensus Development Conference, Statement on Genetic Testing for Cystic Fibrosis, “Genetic testing for Cystic Fibrosis,” Archives of Internal Medicine 159 (1999): 1529–39.

ACOG/ACMG, supra note 69.

Morgan M. A. Driscoll D. A. Mennuti M. T. , and Schulkin J. , “Practice Patterns of Obstetrician-Gynecologists Regarding Preconception and Prenatal Screening for Cystic Fibrosis,” Genetics in Medicine 6 (2004): 450–5.

See, for example, Polnay J. C. Davidge A. Lyn U. C. , and Smyth A. R. , “Parental Attitudes: Antenatal Diagnosis of Cystic Fibrosis,” Archives of Disease in Childhood 87 (2002): 284–6; Henneman L. Bramsen I. van Os T. A. Reuling I. E. Heyerman H. G. van der Laag J. van der Ploeg H. M. , and ten Kate L. P. , “Attitudes towards Reproductive Issues and Carrier Testing among Adult Patients and Parents of Children with Cystic Fibrosis (CF),” Prenatal Diagnosis 21 (2001): 1–9; Brock D. J. , “Prenatal Screening for Cystic Fibrosis: 5 Years' Experience Reviewed,” Lancet 347 (1996): 148–50; Scotet V. Audrezet M. P. Roussey M. Rault G. Blayau M. De Braekeleer M. , and Ferec C. , “Impact of Public Health Strategies on the Birth Prevalence of Cystic Fibrosis in Brittany, France,” Human Genetics 113 (2003): 280–5; Dupuis A. Hamilton D. Cole D. E. , and Corey M. , “Cystic Fibrosis Birth Rates in Canada: A Decreasing Trend Since the Onset of Genetic Testing,” Journal of Pediatrics 147 (2005): 312–5.

See, for example, Polnay , supra note 78; Henneman , supra note 78; Brock , supra note 78.

See, for example, Kaplan F. , “Tay-Sachs Disease Carrier Screening: A Model for Prevention of Genetic Disease,” Genetic Testing 2 (1998): 271–92; and Wailoo K. and Pemberton S. , The Troubled Dream of Genetic Medicine (Baltimore MD: Johns Hopkins University Press, 2006): 39–41.

See quotes by Kaback Michael Siegler Mark and Collins Francis in Kolata G. , “Nightmare or the Dream of a New Era in Genetics?” The New York Times, December 7, 1993, at A1, C3.

Holtzman , supra note 24, at 132.

Gason A. A. Delatycki M. B. Metcalfe S.A. , and Aitken M. A. , “It's ‘Back to School’ for Genetic Screening,” European Journal of Human Genetics 14 (2006): 384–9, at 386.

Ross L. F. , “Informed Consent in Pediatric Research,” Cambridge Quarterly of Healthcare Ethics 13 (2004): 346–358.

Santelli J. Rosenfeld W. DuRant R. Rosenfeld W. , and Dubler N. , “Guidelines for Adolescent Health Research: A Position Paper on the Society for Adolescent Medicine,” Journal of Adolescent Health 17 (1995): 270–276; Final Report to NHRPAC from Children's Workgroup, available at <http://www.hhs.gov/ohrp/nhrpac/documents/nhrpac16.pdf> (last visited September 19, 2006); and Field M. J. , and Behrman R. E. , eds., for the Committee on Clinical Research Involving Children, the Institute of Medicine (IOM), The Ethical Conduct of Clinical Research Involving Children (Washington DC: The National Academy Press, 2004): 186.

Ross , supra note 84, at 350.

Ross , supra note 84, at 350–2.

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).

This is summarized in Ross , supra note 48, at 160–162.

Wailoo K. , Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health (Chapel Hill, NC: University of North Carolina Press, 2001): 216–218.

See, for example, Geller L. N. Alper J. S. Billings P.R. Barash C. I. Beckwith J. , and Natowicz M. R. , “Individual, Family, and Societal Dimensions of Genetic Discrimination: A Case Study Analysis,” Science & Engineering Ethics 2 (1996): 71–88; Taylor S. D. Otlowski M. F. Barlow-Stewart K. K. Treloar S. A. Stranger M. , and Chenoweth K. , “Investigating Genetic Discrimination in Australia: Opportunities and Challenges in the Early Stages,” New Genetics & Society 23 (2004): 225–39; and Joly Y. Knoppers B. M. , and Godard B. , “Genetic Information and Life Insurance: A ‘Real’ Risk?” European Journal of Human Genetics 11 (2003): 561–4.

In Bahrain , a screening program for the homozygous and heterozygous states of sickle cell anemia, beta-thalassemia, and glucose-6-phophate dehydrogenase was performed in 1997–1998. The screening required parental consent and 81percent of parents consented. See, Al-Arrayed S. Hafadh N. Al-Mukhareq H. , and Sanad H. , “Student Screening for Inherited Blood Disorders in Bahrain,” Eastern Mediterranean Health Journal 9 (2003): 344–52. Whether the adolescents (aged 16–20 years) had to assent or consent as well was not stated in the article.

Campbell and Ross , supra note 37, at 96.

Kaplan F. Clow C. , and Scriver C. R. , “Cystic Fibrosis Carrier Screening by DNA Analysis: A Pilot Study of Attitudes among Participants,” American Journal of Human Genetics 49 (1991): 240–242, at 240.

Mitchell , supra note 3, at 541.

Kaplan , supra note 94, at 240.

Durfy , supra note 49, at 141.

Durfy , supra note 49, at 152.

Durfy , supra note 49, at 154. Australian clinicians are also looking into genetic susceptibility screening in public high schools. Gason described a pilot program to determine adolescent willingness to undergo genetic susceptibility screening for hereditary hemochromatosis in the secondary schools. See, Gason A. A. Aitken M. A. Metcalfe S. A. Allen K. J. , and Delatycki M. B. , “Genetic Susceptibility Screening in Schools: Attitudes of the School Community towards Hereditary Haemochromatosis,” Clinical Genetics 67 (2005): 166–74. The researchers calculated that they could get two-thirds of students to participate in a school-based program but acknowledged that more needs to be understood with regard to clinical penetrance before such a program should be implemented. Id., at 173.

Beck , supra note 2.

See, for example, D'Souza G. McCann C. L. Hedrick J. Fairley C. Nagel H. L. Kushner J. D. , and Kessel R. , “Tay-Sachs Disease Carrier Screening: A 21–Year Experience,” Genetic Testing 4 (2000): 257–63; and Krischer J. P. Savitt T. L. Spring A. Wallace S. E. Garnica A. D. , and Frias J. L. , “Evaluation of a Tay-Sachs Screening Program on a College Campus,” Southern Medical Journal 75 (1982): 169–74.

D'Souza , supra note 101, at 258.

Beck , supra note 2.

Krisher , supra note 101, at 169.

Krisher , supra note 101, at 171.

Krisher , supra note 101, at 172.

Krisher , supra note 101, at 173–174.