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Decision making for seriously compromised newborns: the importance of exploring cultural differences and unintended consequences

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References

  1. Itsara A, Cooper GM, Baker C, Girirajan S, Li J, Absher D et al. Population analysis of large copy number variants and hotspots of human genetic disease. Am J Hum Genet 2009; 84 (2): 148–161.

    Article  CAS  Google Scholar 

  2. O’Connor TA, Higgins RR . Trisomy 16p in a liveborn infant and review of trisomy. 16p. Am J Med Genet 1992; 42 (3): 316–319.

    Article  Google Scholar 

  3. Tschernigg M, Petek E, Leonhardtsberger A, Wagner K, Kroisel PM . Terminal tandem duplication of 16p: a case with ‘pure’ partial trisomy (16)(pter-->p13). Genet Couns 2002; 13 (3): 303–307.

    CAS  PubMed  Google Scholar 

  4. Ruiter EM, Koolen DA, Kleefstra T, Nillesen WM, Pfundt R, de Leeuw N et al. Pure subtelomeric microduplications as a cause of mental retardation. Clin Genet 2007; 72 (4): 362–368.

    Article  CAS  Google Scholar 

  5. Behjati F, Shafaghati Y, Firouzabadi SG, Kahrizi K, Bagherizadeh I, Najmabadi H et al. M-banding characterization of a 16p11.2p13.1 tandem duplication in a child with autism, neurodevelopmental delay and dysmorphism. Eur J Med Genet 2008; 51 (6): 608–614.

    Article  Google Scholar 

  6. Nagamani SC, Erez A, Bader P, Lalani SR, Scott DA, Scaglia F et al. Phenotypic manifestations of copy number variation in chromosome 16p13.11. Eur J Hum Genet 2001; 19 (3): 280–286.

    Article  Google Scholar 

  7. Barber JC, Hall V, Maloney VK, Huang S, Roberts AM, Brady AF et al. 16p11.2-p12.2 duplication syndrome; a genomic condition differentiatedfrom euchromatic variation of 16p11.2. Eur J Hum Genet. 2012; e-pub ahead of print 25 July 2012; doi:10.1038/ejhg.2012.144.

  8. Sommer A, Pastore M, Wenger G . Trisomy 16p: a longitudinal profile and photo essay. Am J Med Genet Part A 2006; 140 (2): 174–179.

    Article  Google Scholar 

  9. Rochat MK, Riegel M, Schinzel A . Long-term follow-up of a 26-year-old male with duplication of 16p: clinical report and review.’. Am J Med Genet Part A 2007; 143 (4): 399–408.

    Article  Google Scholar 

  10. Paris JJ, Schreiber MD, Moreland MP . Ethical and legal issues in assisted ventilation In: Goldsmith JP, Karotkin EH, Siede BL, (eds.) Assisted Ventilation of the Neonate 5th ed Elsevier/Saunders: St. Louis, , 2011, pp 94–106.

  11. Presidents’ Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment. US Printing Office: Washington, DC, 1983 220.

  12. American Academy of Pediatrics Committee on Fetus and Newborn. Nonintervention on withdrawal of intensive care for high risk newborns. Pediatrics 2007; 119: 401–403.

    Article  Google Scholar 

  13. In re Quinlan. 70 N.J. 10, 355 A.2d 647 (1976).

  14. Paris JJ, Ferranti J, Reardon F . From the Johns Hopkins Baby to Baby Miller: what we have learned from four decades of reflection on neonatal cases. J Clin Ethic 2001; 12: 207–214.

    CAS  Google Scholar 

  15. Mill JS On Liberty. Bartleby.com 1999, www.bartleby.com/130/ Accessed, July 15, 2012.

  16. Dworkin G . Paternalism. Monist 1972; 56: 63–84.

    Article  Google Scholar 

  17. Savulescu J . Rational non-interventional paternalism: why doctors ought to make judgments of what is best for their patients. J Med Ethics 1995; 21: 327–331.

    Article  CAS  Google Scholar 

  18. Payton v. Weaver, 131 Cal.App.3d 38 (Cal.Ct.App.1982) (recognizing well established ‘general proposition’ that a physician may abandon a patient only after ‘ample opportunity [is] afforded to secure the presence of other medical assistance’): Hongsathavij v. Queen of Angels/Hollywood Presbyterian Med. Ctr., 64 Cal.App.4th 1123, 1138 (Cal.Ct. App. 1998) (affirming disciplinary sanction imposed on physician who abandoned patient without properly ‘sequr[ing] the presence of another medical attendant’).

  19. Paris JJ . Manslaughter or a legitimate parental decision? The Messenger case. J Perinatol 1996; 16: 60–64.

    CAS  PubMed  Google Scholar 

  20. Cal. Penal Code §273a(a).

  21. Billings JA . The end-of-lie family meeting in intensive care. ‘ J Palliat Care 2011; 14: 1042–1050.

    Google Scholar 

  22. Kirchhoff KT, Walker L, Hutton A, Spuhler V, Cole BV, Clemmer T . ‘The vortex: families’ experiences with death in the intensive care unit. Amer J Crit Care 2002; 11: 200–209.

    Google Scholar 

  23. Pellegrino ED, Thomasma DC . The Virtues in Medical Practice. Oxford University Press: New York, 1993.

    Google Scholar 

  24. Fins JJ . From contract to covenant in advance care planning. J Law Med Ethics 1999; 27: 46–51.

    Article  Google Scholar 

  25. Jonsen AR, Toulmin S . The Abuse of Casuistry: A History of Moral Reasoning. University of California Press: Berkley, 1988.

    Google Scholar 

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Penn, A., Paris, J. & Moore, M. Decision making for seriously compromised newborns: the importance of exploring cultural differences and unintended consequences. J Perinatol 33, 505–508 (2013). https://doi.org/10.1038/jp.2012.152

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