3.2 3.2.1 66 3.1.1 3.2.3 67 68 66 Philip M. Farrell et al., Newborn Screening for Cystic Fibrosis in Wisconsin: First Application of Population-based Molecular Genetic testing, 93 WIS MED J 415-21 (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 406-7 (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 835-36 (David L. Rimoin et al. eds., 4 th ed. 2002) 68 ROBERT F. WEAVER & PHILIP W. HEDRICK 66 2001/9
1. 2. 3. 69 70 71 72 the Institution of Medicine 1. 2. 3. entire population 1. 2. 69 D. SHICKLE & I. HARVEY, SCREENING FOR CYSTIC FIBROSIS CARRIER STATUS 90 (1996), quoted in Shickle, supra note 9, at 30. 70 http://www.pmf.org.tw/pmf/n_s/intr01.htm 2003/1/13 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 243-44, 293-94, 312-19 (2000) See also Erbe & Levy, supra note 67, at 826-27
3. 73 late onset disorders 74 75 76 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) 74 1. 2. 3. See ADVISORY COMMITTEE ON GENETIC TESTING, supra note 6, at 8, 13 75 Duchenne muscular dystrophy, DMD DMD British Medical Association, BMA See BRITISH MEDICAL ASSOCIATION, supra note 9, at 116-17 76 Ross & Moon, supra note 73, at 161-62 77 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).
Delaware Florida Wyoming D.C. Kansas 78 79 80 81 82 83 84 3.2.2 78 National Conference of State Legislatures, Newborn Genetic Screening Privacy Laws, at http://www.ncsl.org/programs/health/screeningprivacy.htm (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 118 2001 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) 81 4.3.1.1 82 83 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 19. 84
85 G6PD 30% G6PD G6PD 99% 86 1. 2. 3. 4. 5. - - 1. 2. 3. 87 4. 88 89 85 http://www.hmlife.com.tw/health/a2.htm 2002/12/5 86 4 2000/10/10 87 http://www.hmlife.com.tw/health/a2.htm 2002/12/5 88 - http://health99.doh.gov.tw/mb/mb4.htm 2003/6/12 89 http://www.twch.gov.tw/class/genetic/ /.htm 2002/12/13
90 91 Tandem Mass 3.1.4 92 93 90 89 3 1, 100 http://nbs.mc.ntu.edu.tw/news/news7.htm 2000/3/1 2002/12/13 91 : http://nbs.mc.ntu.edu.tw/news/news9.htm 2001/8/17 2002/12/13 92 2002/7 93 http://www.cgmh.org.tw/chldhos/intr/c4a00/form/nb/.htm 2003/7/8
94 3.2.3 ( ) ( ) 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).
95 95 I-1-I-2 1997/4
3-2 I-7 1997/4
96 3-2 96 2003/6/12 - http://health99.doh.gov.tw/mb/mb4.htm 2003/6/12
97 98 99 100 IC 101 97 http://www.genes.at-taiwan.com/nuth/gdmc.htm 2002/12/9 98 http://nbs.mc.ntu.edu.tw/query.html 2003/1/15 99 http://www.nhi.gov.tw/02hospital/hospital_5_01.htm 2003/6/7 100 http://www.nhi.gov.tw/12lawrule/file/a28.doc 2002/12/19 2003/6/7 101 IC http://text.enhi.com.tw/whatsiccard/920102 IC.pdf 2003/1/2 2003/6/7
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