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1 Philip M. Farrell et al., Newborn Screening for Cystic Fibrosis in Wisconsin: First Application of Population-based Molecular Genetic testing, 93 WIS MED J (1994), quoted in Philip M. Farrell et al., Newborn Screening for Cystic Fibrosis in Wisconsin: A Paradigm for Public Health Genetics Policy Development, in GENETICS AND PUBLIC HEALTH IN THE 21ST CENTURY: USING GENETIC INFORMATION TO IMPROVE HEALTH AND PREVENT DISEASE (Muin J. Khoury et al. eds., 2000). 67 See Richard W. Erbe & Harvey L. Levy, Neonatal screening, in EMERY AND RIMOIN'S PRINCIPLES AND PRACTICE OF MEDICAL GENETICS (David L. Rimoin et al. eds., 4 th ed. 2002) 68 ROBERT F. WEAVER & PHILIP W. HEDRICK /9

2 the Institution of Medicine entire population D. SHICKLE & I. HARVEY, SCREENING FOR CYSTIC FIBROSIS CARRIER STATUS 90 (1996), quoted in Shickle, supra note 9, at /1/13 71 See DORIS TEICHLER ZALLEN, DOES IT RUN IN THE FAMILY?: A CONSUMER S GUIDE TO DNA TESTING FOR GENETIC DISORDERS 160 (1997) 72 See RUTH CHADWICK ET AL. EDS., THE ETHICS OF GENETIC SCREENING 36, 47, 83, 91, 95-96, 106, 123 (1999) See MUIN J. KHOURY ET AL. EDS., GENETICS AND PUBLIC HEALTH IN THE 21ST CENTURY: USING GENETIC INFORMATION TO IMPROVE HEALTH AND PREVENT DISEASE , , (2000) See also Erbe & Levy, supra note 67, at

3 3. 73 late onset disorders susceptibility screening 77 genetic-specific privacy law 73 See Lainie Friedman Ross & Margaret R. Moon, Ethical Issues in Pediatric Genetics, in GENETICS IN THE CLINIC: CLINICAL, ETHICAL, AND SOCIAL IMPLICATIONS FOR PRIMARY CARE 159 (Mary B. Mahowald et al. eds., 2001) See ADVISORY COMMITTEE ON GENETIC TESTING, supra note 6, at 8, Duchenne muscular dystrophy, DMD DMD British Medical Association, BMA See BRITISH MEDICAL ASSOCIATION, supra note 9, at Ross & Moon, supra note 73, at predictive See A. J. Clarke, The Genetic Dissection of Multifactorial Disease: The Implications of susceptibility screening, in GENETICS, SOCIETY AND CLINICAL PRACTICE 96, 102 (P. S. Harper & A. J. Clarke, 1997).

4 Delaware Florida Wyoming D.C. Kansas National Conference of State Legislatures, Newborn Genetic Screening Privacy Laws, at (July, 2002) (June 7, 2003). 79 M. Therese Lysaught See M. Therese Lysaught et al., A Pilot Test of DNA-based Analysis Using Anonymized Newborn Screening Cards in Iowa, in STORED TISSUE SAMPLES: ETHICAL, LEGAL, AND PUBLIC POLICY IMPLICATIONS 16 (Rober F. Weir ed., 1998). 80 LORI ANDREWS & DOROTHY NELKIN Kimberly A. Quaid, Genetic Information, Ethics, Informed Consent to Testing and Screening, in ENCYCLOPEDIA OF ETHICAL, LEGAL, AND POLICY ISSUES IN BIOTECHNOLOGY 398 (Thomas H. Murray & Maxwell I. Mehlman eds., 2000) informed refusal, informed dissent See B. L. Therrell et al., Guidelines for the Retention, Storage, and Use of Residual Dried Blood Spot Samples after Newborn Screening Analysis: Statement of the Council of Regional Networks for Genetic Services, 57 BIOCHEMICAL & MOLECULAR MED. 116, 121 (1996); See also NUFFIELD COUNCIL ON BIOTETHICS, supra note 9, at

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7 ( ) ( ) 94 See Mei-Chih Huang & Shio-Jean Lin, Newborn Screening: Should Explicit Parental Consent Be Required?, 44: 3 ACTA PAEDIATRIC TAIWANICA (2003/2) (In press).

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DNA somatic mutation 4 5 genetic disease genetic inherited illness 6 somatic cell genetic disease 7 genetic disease genetic screening 4 3 1 3.1 3.1.1 genetic testing Genetic Information Law DNA DNA 2 13145 1-201(d) DNA RNA 3 DNA DNA DNA DNA 1 GRAEME LAURIE, GENETIC PRIVACY: A CHALLENGE TO MEDICO-LEGAL NORMS 86 (2002). 2 Genetic Information