The ethics of krabbe newborn screening

Public Health Ethics

Volumn 6, Issue 1, 2013, Pages 114-119

  Dees, Richard H ^a   Kwon, Jennifer M ^a  

^a UNIVERSITY OF ROCHESTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

GALACTOSYLCERAMIDASE;

ENZYME ACTIVITY; GLOBOID CELL LEUKODYSTROPHY; HEALTH CARE COST; HEMATOPOIETIC STEM CELL TRANSPLANTATION; HUMAN; INFORMED CONSENT; MEDICAL ETHICS; NEWBORN SCREENING; PARENT; PRIORITY JOURNAL; REVIEW; UNITED STATES;

EID: 84875603632     PISSN: 17549973     EISSN: 17549981     Source Type: Journal    
DOI: 10.1093/phe/phs033     Document Type: Review

References (28)

1. ACMG (American College of Medical Genetics). (2006). Newborn Screening: Toward a Uniform Screening Panel and System: Executive Summary. Genetics in Medicine, 8, 1S-11S.
2. Baily, M. A. and Murray, T. H. (2008). Ethics, Evidence, and Cost in Newborn Screening. Hastings Center Report, 38, 23-31.
3. Botkin, J. R. (2009). Research for Newborn Screening: Developing a National Framework. In Baily, M. A. and Murray, T. H. (eds), Ethics and Newborn Genetic Screenings: New Technologies, New Challenges. Baltimore: Johns Hopkins Press, pp. 212-236.
4. Clayton, E. W. (2005). Talking with Parents Before Newborn Screening. Journal of Pediatrics, 47, S26-S29.
5. Comeau, A. M. and Levin, D. E. (2009). Population-based Research with a Public Health Service: Two Models for Compliance with the Common Rule in the Massachusetts Newborn Screening Program. In Baily, M. A. and Murray, T. H. (eds), Ethics and Newborn Genetic Screenings: New Technologies, New Challenges. Baltimore: Johns Hopkins Press, pp. 274-291.
6. De Luca, J. M., Kearney, M. H., Norton, S. A. and Arnold, G. L. (2011). Parents' Experience of Expanded Newborn Screening Evaluations. Pediatrics, 128, 53-61.
7. Detmar, S., Hosli, E., Dijkstra, N., Nijsingh, N., Rijnders, M. and Verweij, M. (2007). Information and Informed Consent for Neonatal Screenings: Opinions and Preferences of Parents. Birth, 34, 238-244.
8. Duffner, P. K., Caggana, M., Orsini, J. J., Wenger, D. A., Patterson, M. C., Crosley, C. J., Kurtzberg, J., Arnold, G. L., Escolar, M. L., Adams, D. J., Andriola, M. R., Aron, A. M., Ciafaloni, E., Djukic, A., Erbe, R. W., Galvin-Parton, P., Helton, L. E., Kolodny, E. H., Kosofsky, B. E., Kronn, D. F., Kwon, J. M., Levy, P. A., Miller-Horn, J., Naidich, T. P., Pellegrino, J. E., Provenzale, J. M., Rothman, S. J. and Wasserstein, M. P. (2009a). Newborn Screening for Krabbe Disease: The New York State Model. Pediatric Neurology, 40, 245-252.
9. Duffner, P. K., Caviness, V. S. Jr, Erbe, R. W., Patterson, M. C., Schultz, K. R., Wenger, D. A. and Whitley, C. (2009b). The Long-term Outcomes of Presymptomatic Infants Transplanted for Krabbe Disease: Report of the Workshop Held on July 11 and 12, 2008, Holiday Valley, New York. Genetics in Medicine, 11, 450-454.
10. Escolar, M. L. (2011). Diffusion Tensor Imaging (DTI) in Krabbe disease. Study registered at Clinical Trials.gov., available from: http://clinicaltrials. gov/ct2/show/NCT00787865?term=krabbe+disease &rank=1 [accessed 6 September 2012].
11. Escolar, M. L., Poe, M. D., Provenzale, J. M., Richards, K. C., Allison, J., Wood, S., Wenger, D. A., Pietryga, D., Wall, D., Champagne, M., Morse, R., Krivit, W. and Kurtzberg, J. (2005). Transplantation of Umbilical-cord Blood in Babies with Infantile Krabbe Disease. New England Journal of Medicine, 352, 2069-2081.
12. Faden, R., Chwalow, J., Holtzman, N. A. and Horn, S. D. (1982). A Survey to Evaluate Parental Consent as Public Policy for Neonatal Screening. American Journal of Public Health, 72, 1347-1352.
13. Feuchtbaum, L., Cunningham, G. and Sciortino, S. (2007). Questioning the Need for Informed Consent: A Case Study of California's Experience with a Pilot Newborn Screening Research Project. Journal of Empirical Research on Human Research Ethics, 2, 3-14.
14. Hasegawa, L. E., Fergus, K. A., Ojeda, N. and Au, S. M. (2011). Parental Attitudes Toward Ethical and Social Issues Surrounding the Expansion of Newborn Screening Using New Technologies. Public Health Genomics, 14, 298-306.
15. Kemper, A. R., Knapp, A. A., Green, N. S., Comeau, A. M., Metterville, D. R. and Perrin, J. M. (2010). Weighing the Evidence for Newborn Screening for Early-infantile Krabbe Disease. Genetics in Medicine, 12, 539-543.
16. Kim, S., Lloyd-Puryear, M. A. and Tonniges, T. F. (2003). Examination of the Communication Practices Between State Newborn Screening Programs and the Medical Home. Pediatrics, 111, e120-e126.
17. Kolodny, E. H., Raghavan, S. and Krivit, W. (1991). Late-onset Krabbe Disease (Globoid Cell Leukodystrophy): Clinical and Biochemical Features of 15 Cases. Developmental Neuroscience, 13, 232-239.
18. Krivit, W., Shapiro, E. G., Peters, C., Wagner, J. E., Cornu, G., Kurtzberg, J., Wenger, D. A., Kolodny, E. H., Vanier, M. T., Loes, D. J., Dusenbery, K. and Lockman, L. A. (1998). Hematopoietic Stem-cell Transplantation in Globoid-cell Leukodystrophy. New England Journal of Medicine, 338, 1119-1126.
19. Laing, I. A. and Mac Intosh, N. (2004). Practicalities of Consent. Lancet, 364, 659.
20. Mandl, K. D., Feit, S., Larson, C. and Kohane, I. S. (2002). Newborn Screening Program Practices in the United States: Notification, Research, and Consent. Pediatrics, 109, 269-273.
21. Miller, F. A., Hayeems, R. Z., Carroll, J. C., Wilson, B., Little, J., Allanson, J., Bytautas, J. P., Paynter, M., Christensen, R. and Chaktraborty, P. (2010). Consent for Newborn Screening: The Attitudes of Health Care Providers. Public Health Genomics, 13, 181-190.
22. Nicholls, S. G. (2012). Proceduralisation, Choice and Parental Reflections on Decisions to Accept Newborn Bloodspot Screening. Journal of Medical Ethics, 38, 299-303.
23. Ross, L. F. (2010). Mandatory Versus Voluntary Consent for Newborn Screening? Kennedy Institute of Ethics Journal, 20, 299-328.
24. Ross, L. F. (2012). Newborn Screening for Lysosomal Storage Diseases: An Ethical and Policy Analysis. Journal of Inherited Metabolic Disease, 35, 627-634.
25. Salveson, R. (2011). Expansion of the New York State Newborn Screening Panel and Krabbe Disease: A Systematic Program Evaluation. New York: Dissertation, Columbia University.
26. Timmermans, S. and Buchbinder, M. (2010). Patients-in-waiting: Living Between Sickness and Health in the Genomics Era. Journal of Health and Social Behavior, 51, 408-423.
27. Wenger, D. A. (2011). Krabbe Disease. In Pagon, R. A., Bird, T. D., Dolan, C. R., Stephens, K. and Adam, M. P. (eds), Gene Reviews. Seattle: University of Washington.
28. Wilson, J. M. G. and Jungner, G. (1968). Principles and Practice of Screeningfor Disease. Public Health Papers 34, Geneva: World Health Organization.