Ethical dilemmas in the treatment of children with disabilities

Pediatric Annals

Volumn 33, Issue 11, 2004, Pages 752-761

  Silber, Tomas ^a,b   Batshaw, Mark L ^c  

^a GEORGE WASHINGTON UNIVERSITY SCHOOL OF MEDICINE AND HEALTH SCIENCES   (United States)

^b CHILDREN'S NATIONAL MEDICAL CENTER   (United States)

^c CHILDREN S RESEARCH INSTITUTE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CHILDHOOD DISEASE; DECISION MAKING; DISABILITY; GENETIC SCREENING; LAW; LIVING WILL; MEDICAL ETHICS; ORGAN DONOR; PROFESSIONAL PRACTICE; REVIEW;

EID: 8744298508     PISSN: 00904481     EISSN: None     Source Type: Journal    
DOI: 10.3928/0090-4481-20041101-10     Document Type: Review

References (45)

1. Engelhardt HT. The bioethics consultant: giving moral advice in the midst of moral controversy. HEC Forum. 2003;15(4):362-382.
2. Committee on Hospital Care, American Academy of Pediatrics. Family centered care and the pediatrician's role. Pediatrics, 2003; 112(3pt1):691-697.
3. Shevell MI. Clinical ethics and developmental delay. Semin Pediatr Neurol. 1998; 5(1):70-75.
4. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 4th ed. New York, NY Oxford University Press; 1994.
5. Mappes T, Degrazia, D, eds. Biomedical Ethics. 5th ed. New York, NY: McGraw Hill Higher Education; 2000.
6. Cesire VR, Blustein J, Fleischman AR. Urban Bioethics. Kennedy Inst Ethics J. 2000;10(1):1-21.
7. Cassidy RC, Fleischman AR. Pediatric Ethics: From Principles To Practice. Amsterdam, The Netherlands: Gordon and Breach Science Publishers; 1996.
8. Informed consent, parental permission, and assent in pediatric practice. Committee on Bioethics, American Academy of Pediatrics. Pediatrics. 1995;95(2):314-317.
9. Bartholome WG. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995;96(5 pt 1):981-982.
10. Ford C, English A, Sigman G. Confidential Health Care for Adolescents: position paper for the Society for Adolescent Medicine. J Adolesc Health. 2004;35(2):160-167
11. Sigman AS, O'Connor C. Exploration for physicians of the mature minor doctrine. J Pediatr. 1991;119(4):520-525.
12. Brown RH, Truitt RB. Rights of minors to medicaid treatment. De Paul Law Review. 1979;28:290-295.
13. Lee SK, Penner PL, Cox M. Comparison of the attitudes of health care professionals and parents toward active treatment of very low birth weight infants. Pediatrics. 1991; 88(1):110-114.
14. Bach JR, Campagnolo DI. Psychosocial adjustment of post-poliomyelitis ventilator assisted individuals. Arch Phys Med Rehabil. 1992;73(10):934-939.
15. Gerhart KA, Koziol-Mclain J, Lowenstein SR, Whiteneck GG. Quality of life following spinal cord injury: Knowledge and attitude of emergency care providers. Annals of Emergency Medicine. 1994;23(4):807-812.
16. Strong C. The neonatologist's duty to patient and parents. Hastings Cent Rep. 1984; 14(4):10-16.
17. Carter BS, Levetown M., eds. Palliative Care for Infants, Children and Adolescents: A Practical Handbook. Baltimore, MD: Johns Hopkins University Press; 2004.
18. Loewy EH. Limiting but not abandoning treatment in severely mentally impaired patients: A troubling issue for ethics consultants and ethics committees. Camb Q Healthc Ethics. 1994;3(2):216-225.
19. Seriously ill newborns. Deciding to forego life-sustaining treatment. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. U.S. Government Printing Office, Washington, DC, 1983;197-229.
20. Walsh-Kelly CM, Lang KR, Chevako J, et al. Advance directives in a pediatric emergency department. Pediatrics, 1999;103(4 Pt 1):826-830.
21. Ross LF, Moon MR. Ethical issues in genetic testing of children. Arch Pediatr Adolesc Med. 2000;154(9):873-879.
22. McConnell LM, Koenig BA, Greely HT, Raffin TA. Genetic testing and Alzheimer disease: recommendations of the Stanford Program in Genomics, Ethics, and Society. Genet Test. 1999;3(1):3-12.
23. Miller PS. Genetic discrimination in the workplace. J Law Med Ethics. 1998; 26(3):189-197.
24. Genetic testing and insurance. Ad Hoc Committee on Genetic Testing/Insurance Issues. Am J Hum Genet. 1995;56(1):327-331.
25. Nelson RM, Botkjin JR, Kodish ED, et al. Ethical issues with genetic testing in pediatrics. Committee on Bioethics, American Academy of Pediatrics. Pediatrics. 2001; 107(6):1451-1455.
26. Silber TJ. Amniocentesis and selective abortion. Pediatr Ann. 1981;10(10):31-34.
27. Yang EY, Flake AW, Adzick NS. Prospects for fetal gene therapy. Semin Perinatol. 1999; 23(6):524-534.
28. Glover NM, Glover SJ. Ethical and legal issues regarding selective abortion of fetuses with Down syndrome. Ment Retard. 1996; 34(4):207-214.
29. Kenner C, Dreyer LA. Prenatal and neonatal testing and screening: a double-edged sword. Nurs Clin of North Am. 2000;35(3):627-642.
30. Rapp R. Testing Women, Testing The Fetus. The Social Impact of Amniocentesis in America. New York, NY: Routledge; 1999.
31. Fost N. Access to IVF. Pediatr Rev. 1999;20(8):e36-7.
32. Fost NC. Conception for donation. JAMA. 2004;291(17):2125-2126.
33. Monat-Haller RK. Understanding and expressing sexuality: Responsible choices for individuals with developmental disabilities. Baltimore, MD: Paul H. Brookes Publishing Co.; 1992.
34. Crichton J. Balancing restriction and freedom in the care of people with intellectual disability. J Intellect Disabil Res. 1998;42(pt 2):189-195.
35. Lebacqz K. Sterilization: ethical aspects. In: Reich WT, Ed. Encyclopedia of Bioethics. New York, NY: Collier Mac; 1979.
36. American Academy of Pediatrics Committee on Bioethics: Sterilization of women who are mentally handicapped. Pediatrics. 1990; 85(5):868-871.
37. The use of anencephalic neonates as organ donors. Council on Ethical and Judicial Affairs, American Medical Association. JAMA. 1995;273(20):1614-1618.
38. Woodstock Theological Center. Ethical Issues in Managed Health Care Organizations. Washington, DC: Georgetown University Press; 1999.
39. Institutional Ethic Committees. Committee on Bioethics, American Academy of Pediatrics. Pediatrics. 2001;107:205-209.
40. Core Competencies for Health Care Ethics Consultations. Glenview, IL: American Society for Bioethics and Humanities; 1998.
41. Dresser R. Mentally disabled research subjects: The enduring policy issues. JAMA. 1996;276(1):67-72.
42. Levine RJ. Ethics and regulation of clinical research. 2nd ed. New Haven, CT: Yale University Press; 1988.
43. Jonsen AR. Research involving children: Recommendations of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Pediatrics. 1978;62(2):131-136.
44. Fedder Kitay E. Love's Labor: Essay on Women. Equality and Dependency. New York, NY: Routledge; 1998.
45. Satcher D. Our commitment to eliminate racial and ethnic health disparities. Yale J Health Policy Law Ethics. 2001 Spring;1:1-14.