Storing Newborn Blood Spots: Modern Controversies

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American Academy of Pediatrics (AAP), “Serving the Family from Birth to the Medical Home. Newborn Screening: A Blueprint for the Future,” Pediatrics 106, no. 2, suppl. (2000): 389–422.

See Therrell , supra note 2.

See AAP, supra note 5.

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See Therrell , supra note 2; See HGSA, supra note 4; Association française pour le dépistage et la prévention des handicaps de l'enfant (AFDPHE), “Les Prélèvements de Sang sur Papier pour le Dépistage Néonatal. Recommandations pour leur Collecte, leur Traitement et leur Conservation,” Archives de Pédiatrie 2 (1995): 3–7.

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See AFDPHE, supra note 9.

France – National Consultative Bioethics Committee (CCNE), Opinion and Recommendations on “Genetics and Medicine: From Prediction to Prevention,” Report, No. 46 (October 30, 1995).

Australia – National Pathology Accreditation Advisory Council, Retention of Laboratory Records and Diagnostic Material (2002).

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See Therrell , supra note 2

See Avard D. Kharaboyan L. , and Knoppers B.M. , “Using ‘Spots’ in Research: Moving Beyond Screening and Treatment” in Association of Public Health Laboratories, 2002 Newborn Screening and Genetic Testing Symposium Proceedings (Phoenix, November 4–7 2002): 319–21.

See Norgaard-Pederson , supra note 16.

See Danish Medical Research Council, supra note 17.

See AAP, supra note 5.

Andrews L. B. Fullarton J.E. Holtzman N.A. , eds., Assessing Genetic Risks: Implications for Health and Social Policy (Washington, D.C.: National Academy Press, 1993): at 277; The New York State Task Force on Life and the Law, Genetic Testing and Screening in the Age of Genomic Medicine, Report (2000), available at <http://www.health.state.ny.us/nysdoh/taskfce/screening.htm>; American Society of Human Genetics, “Statement on Informed Consent for Genetic Research,” American Journal of Human Genetics 59 (1996): 471–74; Tomoeda K. and Matsuda I. , “Biomedical Ethics and Mass Screening of the Newborn in Japan,” Eubios Journal of Asian and International Bioethics 8 (1998): 75–76.

The Nuffield Trust, Learning from Experience: Privacy and the Secondary Use of Data, Report (2002); Royal College of Physicians Committee on Ethical Issues in Medicine, “Research Based on Archived Information and Samples,” Journal of the Royal College of Physicians of London 33 (1999): 264–66.

Clayton E. Steinberg K. Khoury M.J. , “Informed Consent for Genetic Research on Stored Tissue Samples,” JAMA 274 (1995): 1786–92.

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See New York State Task Force, supra note 23.

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See NBAC, supra note 26.

See Therrell , supra note 2.

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Annas G.J. , “Privacy Rules for DNA Databanks. Protecting Coded ‘Future Diaries’,” JAMA 270 (1993): 2346–2350.

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H v G. [M/1868/98]. 1999. Upheld in H v G (2000) 18 FRNZ 572.

New Zealand – Health and Disability Commissioner, Auckland Healthcare – Report on Opinion, Case 99HDC09011 (2000).

See H v G, supra note 34.

See Elkin , supra note 8.

Abramson D. , “Passing the Test: New York's Newborn HIV Testing Policy, 1987–1997,” in Stoto M.A. Almario D.A. , and McCormick M.C. , eds., Reducing the Odds – Preventing Perinatal Transmission of HIV in the United States (Washington: National Academy Press, 1999): 313–40.

Roy D. , “Anonymous HIV Seroprevalence Studies: Ethical Conditions,” in Knoppers B.M. and Laberge C.M. , eds., Genetic Screening. From Newborn to DNA Typing (Amsterdam: Elsevier Science Publishers, 1990): 95–110.