Consideraciones bioéticas del tamizaje neonatal: pautas para su regulación integral;
As considerações bioéticas da triagem neonatal: orientações para a seu regulamentação integral

dc.creatorCifuentes, Ricardo
dc.date.accessioned2020-01-08T19:33:43Z
dc.date.accessioned2022-09-28T20:53:04Z
dc.date.available2020-01-08T19:33:43Z
dc.date.available2022-09-28T20:53:04Z
dc.date.created2020-01-08T19:33:43Z
dc.identifierhttp://hdl.handle.net/10654/34252
dc.identifier.urihttp://repositorioslatinoamericanos.uchile.cl/handle/2250/3736589
dc.publisherUniversidad Militar Nueva Granada
dc.relationhttp://revistas.unimilitar.edu.co/index.php/rlbi/article/view/1445/1223
dc.relationhttp://revistas.unimilitar.edu.co/index.php/rlbi/article/view/1445/1469
dc.relation/*ref*/• Almond; B. (2006). Genetic profiling of newborns: ethical and social issues. Nat Rev Genet; 7(1); 67-71. doi: 10.1038/nrg1745 http://dx.doi.org/10.1038/nrg1745
dc.relation/*ref*/• Beauchamp; T. y Childress; J. F. (2009a). Beneficence. En Principles of Biomedical Ethics (pp. 202-248). New York: Oxford University Press.
dc.relation/*ref*/• Beauchamp; T. y Childress; J. F. (2009b). Nonmaleficence. En Principles of Biomedical Ethics (pp. 150-201). New York: Oxford University Press.
dc.relation/*ref*/• Bermúdez; A. J.; Robayo; D. B.; Rosero; M. J.; Valera; D. A. y Gonzalez; Y. (2013). Situational analysis to implement expanded screening in Colombia. IX Latin American Congress of Inborn Errors of Metabolism and Newborn Screening; Medellin.
dc.relation/*ref*/• Bunnik; E. M.; De Jong; A.; Nijsingh; N. y De Wert; G. M. (2013). The new genetics and informed consent: differentiating choice to preserve autonomy. Bioethics; 27(6); 348-355. doi: 10.1111/bioe.12030 http://dx.doi.org/10.1111/bioe.12030
dc.relation/*ref*/• Burke; W.; Laberge; A. M. y Press; N. (2010). Debating clinical utility. Public Health Genomics; 13(4); 215-223. doi: 10.1159/000279623 http://dx.doi.org/10.1159/000279623
dc.relation/*ref*/• Burke; W.; Pinsky; L. E. y Press; N. A. (2001). Categorizing genetic tests to identify their ethical; legal; and social implications. American Journal of Medical Genetic; 106(3); 233-240. doi: 10.1002/ajmg.10011 http://dx.doi.org/10.1002/ajmg.10011
dc.relation/*ref*/• Campos; D. (2010). Neonatal screening by tandem mass spectrometry: an update. Revista Panamericana de Salud Publica; 27(4); 309-317. doi: S1020-49892010000400010 [pii]
dc.relation/*ref*/• Chadwick; R.; ten Have; H.; Husted; J.; Levitt; M. et al. (1998). Genetic screening and ethics: European perspectives. Journal of Medicine and Philosophy; 23(3); 255-273. doi: 10.1076/jmep.23.3.255.2580 http://dx.doi.org/10.1076/jmep.23.3.255.2580
dc.relation/*ref*/• Chase; D. S.; Tawn; E. J.; Parker; L.; Jonas; P. et al. (1998). The North Cumbria Community Genetics Project. Journal of Medical Genetics; 35(5); 413-416. http://dx.doi.org/10.1136/jmg.35.5.413
dc.relation/*ref*/• De Wert; G. M. (2005). Neonatal screening: dynamics and ethics. Ned Tijdschr Geneeskd; 149(51); 2841-2843.
dc.relation/*ref*/• Dhanda; R. K. y Reilly; P. R. (2003). Legal and ethical issues of newborn screening. Pediatric Annals; 32(8); 540-546. http://dx.doi.org/10.3928/0090-4481-20030801-11
dc.relation/*ref*/• Edwards; E. S.; Bhutani; V. K.; Botkin; J.; Deloian; B. et al. (2008). Newborn screening expands: Recommendations for pediatricians and medical homes - Implications for the system. Pediatrics; 121(1); 192-217. http://dx.doi.org/10.1542/peds.2007-3021
dc.relation/*ref*/• Elliman; D. (2012). Ethical aspects of the expansion of neonatal screening programme due to technological advances. Clinical Chemistry and Laboratoy Medicine; 50(6); 999-1002. doi: 10.1515/cclm.2011.761 http://dx.doi.org/10.1515/cclm.2011.761
dc.relation/*ref*/• Emaldi-Cirión; A. (2002). El consejo genético y la responsabilidad de los médicos que asesoran. Revista Latinoamericana de Bioética; 70-87.
dc.relation/*ref*/• Farrell; M. H.; Christopher; S. A.; Tluczek; A.; Kennedy-Parker; K. et al. (2011). Improving communication between doctors and parents after newborn Screening. Wisconsin Medical Journal; 110(5); 221-227.
dc.relation/*ref*/• Farrell; P. M. (2008). Is newborn screening for cystic fibrosis a basic human right? Journal of Cystic Fibrosis; 7(3); 262-265. doi: 10.1016/j.jcf.2008.01.001 http://dx.doi.org/10.1016/j.jcf.2008.01.001
dc.relation/*ref*/• Goldenberg; A. J.; Dodson; D. S.; Davis; M. M. y Tarini; B. A. (2014). Parents' interest in whole-genome sequencing of newborns. Genetics in Medicine; 16(1); 78-84. doi: 10.1038/gim.2013.76 http://dx.doi.org/10.1038/gim.2013.76
dc.relation/*ref*/• Gómez; A.I. (2010). Principios éticos y jurídicos del derecho genético en las declaraciones internacionales relacionadas con las intervenciones sobre el genoma humano. Vniversitas; (120); 141-168.
dc.relation/*ref*/• Gurian; E. A.; Kinnamon; D. D.; Henry; J. J. y Waisbren; S. E. (2006). Expanded newborn screening for biochemical disorders: the effect of a false-positive result. Pediatrics; 117(6); 1915-1921. doi: 10.1542/peds.2005-2294 http://dx.doi.org/10.1542/peds.2005-2294
dc.relation/*ref*/• Hardart; G. E. y Chung; W. K. (2014). Genetic testing of children for diseases that have onset in adulthood: The limits of family interests. Pediatrics; 134; S104-S110. http://dx.doi.org/10.1542/peds.2014-1394f
dc.relation/*ref*/• Helgesson; G.; Eriksson; S. y Swartling; U. (2007). Limited relevance of the right not to know-reflections on a screening study. Accounts of Chemical Research; 14(3); 197-209. doi: 10.1080/08989620701456322 http://dx.doi.org/10.1080/08989620701456322
dc.relation/*ref*/• Hendrix; K. S.; Meslin; E. M.; Carroll; A. E. y Downs; S. M. (2013). Attitudes about the use of newborn dried blood spots for research: a survey of underrepresented parents. Academic Pediatrics; 13(5); 451-457. doi: 10.1016/j.acap.2013.04.010 http://dx.doi.org/10.1016/j.acap.2013.04.010
dc.relation/*ref*/• Hernández-Álvarez; M. (2008). El concepto de equidad y el debate sobre lo justo en salud. Revista de Salud Pública; 10 sup(1); 72-82. http://dx.doi.org/10.1590/S0124-00642008000600007
dc.relation/*ref*/• Jonas; D.E.; Wilt; T.J.; Taylor; B. C.; Wilkins; T. M. y Matchar; D. B. (2012). Challenges in and Principles for Conducting Systematic Reviews of Genetic Tests Used as Predictive IndicatorsMethods Guide for Medical Test Reviews (pp. 1-17). Rockville: Agency for Healthcare Research and Quality (US). Recuperado de http://www.ncbi.nlm.nih.gov/books/NBK98231/.
dc.relation/*ref*/• Kemper; A. R.; Green; N. S.; Calonge; N.; Lam; W. K. K. et al. (2014). Decision-making process for conditions nominated to the recommended uniform screening panel: Statement of the US department of health and human services secretary's advisory committee on heritable disorders in newborns and children. Genetics in Medicine; 16(2); 183-187. http://dx.doi.org/10.1038/gim.2013.98
dc.relation/*ref*/• Kerruish; N. J. y Robertson; S. P. (2005). Newborn screening: new developments; new dilemmas. Journal of Medical Ethics; 31(7); 393-398. doi: 10.1136/jme.2004.008219 http://dx.doi.org/10.1136/jme.2004.008219
dc.relation/*ref*/• Lantos; J. D. (2011). Dangerous and expensive screening and treatment for rare childhood diseases: the case of Krabbe disease. Developmental Disabilities Research Reviews; 17(1); 15-18. doi: 10.1002/ddrr.133 http://dx.doi.org/10.1002/ddrr.133
dc.relation/*ref*/• Lewis; M. H.; Goldenberg; A.; Anderson; R.; Rothwell; E. y Botkin; J. (2011). State laws regarding the retention and use of residual newborn screening blood samples. Pediatrics; 127(4); 703-712. doi: 10.1542/peds.2010-1468 http://dx.doi.org/10.1542/peds.2010-1468
dc.relation/*ref*/• Lewis; M. H.; Scheurer; M. E.; Green; R. C. y McGuire; A. L. (2012). Research results: preserving newborn blood samples. Science Translational Medicine; 4(159); 159cm112. doi: 10.1126/scitranslmed.3004474 http://dx.doi.org/10.1126/scitranslmed.3004474
dc.relation/*ref*/• Colombia; Congreso de la República (2000). "Ley 599". Recuperado de http://www.alcaldiabogota.gov.co/sisjur/normas/Norma1.jsp?i=6388
dc.relation/*ref*/• Colombia; Congreso de la República (2010). "Ley 1392". Recuperado de http://www.alcaldiabogota.gov.co/sisjur/normas/Norma1.jsp?i=39965
dc.relation/*ref*/• Loscalzo; J.; Kohane; I. y Barabasi; A. L. (2007). Human disease classification in the postgenomic era: a complex systems approach to human pathobiology. Molecular Systms Biololy; 3; 124. doi: 10.1038/msb4100163 http://dx.doi.org/10.1038/msb4100163
dc.relation/*ref*/• Massie; J. y Gillam; L. (2014). Uncertain diagnosis after newborn screening for cystic fibrosis: An ethics-based approach to a clinical dilemma. Pediatric Pulmonology; 49(1); 1-7. doi: 10.1002/ppul.22933 http://dx.doi.org/10.1002/ppul.22933
dc.relation/*ref*/• Matsuda; I. (2003). Bioethical considerations in neonatal screening: japanese experiences. The Southeast Asian Journal of Tropical Medicine and Public Health; 34 suppl (3); 46-48.
dc.relation/*ref*/• Miller; F. A.; Robert; J. S. y Hayeems; R. Z. (2009). Questioning the consensus: managing carrier status results generated by newborn screening. American Journal of Public Health; 99(2); 210-215. doi: 10.2105/ajph.2008.136614 http://dx.doi.org/10.2105/AJPH.2008.136614
dc.relation/*ref*/• Norgaard-Pedersen; B. y Hougaard; D. M. (2007). Storage policies and use of the Danish Newborn Screening Biobank. Journal of Inherited Metabolic Disease 30(4); 530-536. doi: 10.1007/s10545-007-0631-x http://dx.doi.org/10.1007/s10545-007-0631-x
dc.relation/*ref*/• Ortiz; T. (2008). Programa Nacional de Tamizaje y Diagnóstico Genético. Curso Continuo de Actualización en Pediatría; 7; 14-18. Recuperado de https://scp.com.co/precop/precop_files/modulo_7_vin_2/14-18%20Programa%20tamizaje.pdf
dc.relation/*ref*/• Orzalesi; M. y Danhaive; O. (2009). Ethical problems with neonatal screening. Annali dell'Istituto Superiore di Sanita; 45(3); 325-330.
dc.relation/*ref*/• President's Council on Bioethics (2008). The changing moral focus of newborn screening; an ethical analysis. Recuperado de https://repository.library.georgetown.edu/bitstream/handle/10822/559367/Newborn%20Screening%20for%20the%20web.pdf?sequence=1&isAllowed=y
dc.relation/*ref*/• Raffan; E. y Semple; R. K. (2011). Next generation sequencing--implications for clinical practice. British Medical Bulletin; 99; 53-71. doi: 10.1093/bmb/ldr029 http://dx.doi.org/10.1093/bmb/ldr029
dc.relation/*ref*/• Raho; J.A. (2008). The changing moral focus of newborn screening; an ethical analysis by the President's Council on Bioethics. Appendix newborn screening: an international survey. Recuperado de https://repository.library.georgetown.edu/bitstream/handle/10822/559379/the%20changing%20moral%20focus%20of%20newborn%20screening%20-%20appendix%20-%20joseph%20raho.pdf?sequence=1&isAllowed=y
dc.relation/*ref*/• Richer; J.; Ghebremichael; M. S.; Chudley; A. E.; Robinson; W. M.; W. et al. (2011). Research use of leftover newborn bloodspots: attitudes of Canadian geneticists regarding storage and informed consent requirements. Genetics in Medicine; 13(4); 305-313. doi: 10.1097/GIM.0b013e3181f69da0 http://dx.doi.org/10.1097/GIM.0b013e3181f69da0
dc.relation/*ref*/• Rose; N. C. y Dolan; S. M. (2012). Newborn screening and the obstetrician. Obstetrics & Gynecology; 120(4); 908-917. doi: 10.1097/AOG.0b013e31826b2f0300006250-201210000-00023 [pii]
dc.relation/*ref*/• Sánchez; C. (2002). El derecho a la protección de la intimidad de los datos genéticos. Revista Latinoamericana de Bioética; 104-115.
dc.relation/*ref*/• Schiffman; J. D.; Geller; J. I.; Mundt; E.; Means; A. et al. (2013). Update on pediatric cancer predisposition syndromes. Pediatric Blood & Cancer; 60(8); 1247-1252. doi: 10.1002/pbc.24555 http://dx.doi.org/10.1002/pbc.24555
dc.relation/*ref*/• Schulman; A. (2008). The Future of newborn screening: clouds on the horizon? Recuperado de https://bioethicsarchive.georgetown.edu/pcbe/background/newborn_screening_schulman.html
dc.relation/*ref*/• Strachan; T. y Read; A. (2011). Genes in pedigrees and populations. En Human Molecular Genetics (4ta. edición) (pp. 61-90). New York: Garland Science; Taylor & Francis Group.
dc.relation/*ref*/• Tarini; B. A. (2007). The current revolution in newborn screening: new technology; old controversies. The Archives of Pediatrics & Adolescent Medicine; 161(8); 767-772. doi: 10.1001/archpedi.161.8.767 http://dx.doi.org/10.1001/archpedi.161.8.767
dc.relation/*ref*/• Unesco (1997). Declaración Universal sobre el Genoma Humano y los Derechos Humanos. Recuperado de http://portal.unesco.org/es/ev.php-URL_ID=13177&URL_DO=DO_TOPIC&URL_SECTION=201.html
dc.relation/*ref*/• Unesco (2003). Declaración Internacional sobre los Datos Genéticos Humanos.Recuperado. de http://portal.unesco.org/es/ev.php-URL_ID=17720&URL_DO=DO_TOPIC&URL_SECTION=201.html
dc.relation/*ref*/• Unesco (2005). Declaración Universal sobre Bioética y Derechos Humanos. Recuperado de http://portal.unesco.org/es/ev.php-URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html
dc.rightsDerechos de autor 2016 Revista Latinoamericana de Bioética
dc.rightshttps://creativecommons.org/licenses/by-nc-nd/4.0
dc.sourceRevista Latinoamericana de Bioética; Vol. 16 Núm. 30-1 (2016): Bioética: por un diálogo inter y transdicisplinar; 154-173
dc.source2462-859X
dc.source1657-4702
dc.subjectNeonatal Screening
dc.subjectBioethics
dc.subjectGenetic Testing
dc.subjectLegislation as a topic
dc.subjectTamizaje neonatal
dc.subjectbioética
dc.subjectpruebas genéticas
dc.subjectlegislación como asunto
dc.subjecttriagem neonatal
dc.subjectbioética
dc.subjectprobas genéticas
dc.subjectlegislação como assunto.
dc.titleBioethical issues of neonatal screening: guidelines for its comprehensive regulation
dc.titleConsideraciones bioéticas del tamizaje neonatal: pautas para su regulación integral
dc.titleAs considerações bioéticas da triagem neonatal: orientações para a seu regulamentação integral
dc.typeinfo:eu-repo/semantics/article
dc.typeinfo:eu-repo/semantics/publishedVersion


Este ítem pertenece a la siguiente institución