The sad story of newborn screening for krabbe: The need for good governance

Public Health Ethics

Volumn 6, Issue 1, 2013, Pages 123-126

  Miller, Fiona Alice ^a  

^a UNIVERSITY OF TORONTO   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

CHILD HEALTH; EVIDENCE BASED MEDICINE; GLOBOID CELL LEUKODYSTROPHY; HEALTH CARE QUALITY; HEALTH PRACTITIONER; INFORMED CONSENT; NEWBORN SCREENING; NOTE; POLITICS; PREVENTIVE MEDICINE; PRIORITY JOURNAL; SOCIAL CAPITAL; UNITED STATES;

EID: 84875576097     PISSN: 17549973     EISSN: 17549981     Source Type: Journal    
DOI: 10.1093/phe/pht008     Document Type: Note

References (14)

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2. Botkin, J. R., Clayton, E. W., Fost, N. C., Burke, W., Murray, T. H., Baily, M. A., Wilfond, B., Berg, A. and Ross, L. F. (2006). Newborn Screening Technology: Proceed with Caution. Pediatrics, 117, 1793-1799.
3. Calonge, N., Green, N. S., Rinaldo, P., Lloyd-Puryear, M., Dougherty, D., Boyle, C., Watson, M., Trotter, T., Terry, S. F. and Howell, R. R., for the Advisory Committee on Heritable Disorders in Newborns and Children (2010). Committee Report: Method for Evaluating Conditions Nominated for Population-Based Screening of Newborns and Children. Genetics in Medicine, 12, 153-159.
4. Dhondt, J. L. (2005). Implementation of Informed Consent for a Cystic Fibrosis Newborn Screening Program in France: Low Refusal Rates for Optional Testing. Journal of Pediatrics, 9, S106-S108.
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7. Jochim, A. E. and May, P. J. (2010). Beyond Subsystems: Policy Regimes and Governance. Policy Studies Journal, 38, 303-327.
8. Liebl, B., Nennstiel-Ratzel, U., von Kries, R., Fingerhut, R., Olgemoller, B., Zapf A. and Roscher, A. A. (2002). Very High Compliance in an Expanded MS-MS-Based Newborn Screening Program Despite Written Parental Consent. Preventive Medicine, 34, 127-131.
9. Miller, F. A. (2012). Governance Systems for Newborn Screening: A Comparative Perspective. Presentation at "Newborn Screening: Challenges for Europe". November 19, 2012. Brussels, Belgium.
10. Moyer, V. A., Calonge, N., Teutsch, S. M. and Botkin, J. R. on behalf of the United States Preventive Services Task Force (2008). Expanding Newborn Screening: Process, Policy, and Priorities. Hastings Center Report, 38, 32-39.
11. Natowicz, M. (2005). Newborn Screening\-Setting Evidence-Based Policy for Protection. New England Journal of Medicine, 353, 867-870.
12. Ross, L. F. (2010). Mandatory Versus Voluntary Consent for Newborn Screening? Kennedy Institute of Ethics Journal, 20, 299-328.
13. UK Department of Health. Second Report of the UK National Screening Committee. UK National Screening Committee. Available from: http://www.aogm.org. mo/assets/Uploads/aogm/Guidelines/RCOG\-UK/Second-report-of-UK-NSC.pdf [accessed 24 January 2013].
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