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Genetic Diagnosis and Treatment: Ethical Considerations

Genetic Diagnosis and Treatment: Ethical Considerations Abstract There is a story about a monk who announced that he was leaving the monastery after 25 years. "Is it the food, Brother John?" his superior asked him. "No," he replied, "the food is bad, but I would not leave because of that." "Is it the illumination? Are you concerned about your eyesight?" he was asked. "No," he replied, "The work is tedious, but I would not leave for that reason." "Is it the celibacy?" he was asked. "No," he replied, "like the others, I am lonely, but I took vows with a full awareness of what I was sacrificing, and I would not leave because of that." "Then what is it, why are you leaving?" his exasperated superior wanted to know. "It's just the whole damn thing," Brother John explained. So it is with the new genetic technologies. They raise no new ethical questions for physicians or patients. There References 1. Andrews LB. Medical Genetics: A Legal Frontier . Chicago, Ill: American Bar Foundation; 1987. 2. Annas GJ, Elias S. The human genome project: social policy and research . Polit Life Sci . 1992;11:245-249. 3. Capron AM, Lappe M, Murray RM, et al. Genetic Counseling: Facts, Values and Norms . New York, NY: Alan R Liss Inc; 1979. 4. Committee for the Study of Inborn Errors of Metabolism . Genetic Screening: Programs, Principles and Research . Washington, DC: National Academy of Sciences; 1973. 5. Fost N. Ethical issues in genetics . Pediatr Clin North Am . 1992;39:79-89. 6. Fost N. Ethical implications of screening asymptomatic individuals . FASEB J . 1992;6:2813-2817. 7. Holtzman N. Proceed With Caution: Predicting Genetic Risks in the Recombinant DNA Era . Baltimore, Md: The Johns Hopkins Press; 1989. 8. Karjala D. A legal research agenda for the Human Genome Initiative . Jurimetrics J Law Sci Technol . 1992;32:i-viii, 1-311. 9. Milunsky A, Annas GJ, eds. Genetics and the Law III . New York, NY: Plenum Press; 1985. 10. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research . Splicing Life: The Social and Ethical Issues of Genetic Engineering With Human Beings . Washington, DC: President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research; 1982. 11. Langfelder EJ, Juengst ET. Ethical, Legal and Social Implications (ELSI) Program: National Center for Human Genome Research , NIH. Polit Life Sci . 1993;12:273-275. 12. Capron AM. Unsplicing the Gordian knot: legal and ethical issues in the 'new genetics .' In: Milunsky A, Annas GJ, eds. Genetics and the Law III . New York, NY: Plenum Press; 1985:23-29. 13. Ingelfinger F. Informed but uneducated consent . N Engl J Med . 1972; 287:466-470.Crossref 14. Wilfond BS, Fost N. The cystic fibrosis gene: medical and social implications for heterozygote detection . JAMA . 1990;263:2777-2783.Crossref 15. Katz J. Experimentation With Human Beings . New York, NY: Russell Sage Foundation; 1972:986-993. 16. Holtzman NA. Anatomy of a trial . Pediatrics . 1977;60:932-934. 17. Holtzman NA. What drives neonatal screening? N Engl J Med . 1991; 325:802-804.Crossref 18. Wiswell TE. Circumcision: an update . Curr Probl Pediatr . 1992;22: 424-431. 19. Faden R, Chwalow AJ, Holtzman NA, Horn SD. A survey to evaluate parental consent as public policy for neonatal screening . Am J Public Health . 1982;72:1347-1352.Crossref 20. Robertson JA, Schulman JD. Pregnancy and prenatal harm to offspring: the case of mothers with PKU . Hastings Cent Rep . 1987;17( (4) ):23-33.Crossref 21. Johnsen D. A new threat to pregnant women's autonomy . Hastings Cent Rep . 1987;17( (4) ):33-40.Crossref 22. Tarasoff v Board of Regents of the University of California, 17 Cal3d 425, 551 P2d 334, 131 Cal Rptr 14 (1976). 23. Odell GB. Therapeutic misadventures in neonatal care . In: Gluck L, ed. Modern Perinatal Medicine . St Louis, Mo: Mosby–Year Book; 1974. 24. Hammond KB, Abman SH, Sokol RJ, Accurso FJ. Efficacy of statewide screening for cystic fibrosis by assay of trypsinogen concentrations . N Engl J Med . 1991;325:769-774.Crossref 25. Farrell PM, Mischler EH. Newborn screening for cystic fibrosis . Adv Pediatr . 1992;39:35-70. 26. Tluczek A, Mischler E, Farrell PM, et al. Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis screening . J Dev Behav Pediatr . 1992;13:181-186.Crossref 27. Tluczek A, Mischler EH, Bowers B, et al. Psychological impact of false positive results when screening for cystic fibrosis . Pediatr Pulmonol . 1991; 7( (suppl) ):29-37.Crossref 28. Li FP, Garber JE, Friend SH, et al. Recommendations on predictive testing for germ line p53 muations among cancer-prone individuals . J Natl Cancer Inst . 1992;84:1156-1160.Crossref 29. US Congress, Office of Technology Assessment . Genetic Tests and Health Insurance: Results of a Survey—Background Paper . Washington, DC: Office of Technology Assessment; 1992. Publication OTA-BP-BA-98. 30. US Congress, Office of Technology Assessment . Genetic Monitoring and Screening in the Workplace . Washington, DC: Office of Technology Assessment; 1992. 31. Billings PR, Kohn MA, deCuevas M, Beckwith J, Alper JS, Natowicz MR. Discrimination as a consequence of genetic testing . Am J Hum Genet . 1992;50:476-482. 32. Levine R. Ethics and Regulation of Clinical Research . 2nd ed. Baltimore, Md: Urban and Schwarzenberg; 1986. 33. Allen DB, Fost N, Blizzard RM. Access to Treatment With Human Growth Hormone: Medical, Ethical and Social Issues . Califon, NJ:Synermed; 1992. 34. Coplan J. Wrongful life and wrongful birth: new concepts for the pediatrician . Pediatrics . 1985;75:65-72. 35. Park v Chessin, 46 NY2d 401, 386 NE2d 807 (1978). 36. Wilfond BS, Fost N. The introduction of cystic fibrosis carrier screening into general practice: policy considerations . Milbank Q . 1992;70:629-659.Crossref 37. Daniels N. Just Health Care . Cambridge, England: Cambridge University Press; 1985. 38. Krimsky S. The corporate capture of academic science and its social costs . In: Milunsky A, Annas GJ, eds. Genetics and the Law III . New York, NY: Plenum Press; 1985:45-55. 39. Faculty of Medicine. Policy on Conflicts of Interest and Commitment . Cambridge, Mass: Harvard University; (March) 22, 1990. 40. Healy BB, Campeau L, Gray R, et al. Conflict of interest guidelines for a multicenter clinical trial of treatment after coronary-artery bypass-graft surgery . N Engl J Med . 1990;320:949-952.Crossref http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png American Journal of Diseases of Children American Medical Association

Genetic Diagnosis and Treatment: Ethical Considerations

American Journal of Diseases of Children , Volume 147 (11) – Nov 1, 1993

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Publisher
American Medical Association
Copyright
Copyright © 1993 American Medical Association. All Rights Reserved.
ISSN
0002-922X
DOI
10.1001/archpedi.1993.02160350064009
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Abstract

Abstract There is a story about a monk who announced that he was leaving the monastery after 25 years. "Is it the food, Brother John?" his superior asked him. "No," he replied, "the food is bad, but I would not leave because of that." "Is it the illumination? Are you concerned about your eyesight?" he was asked. "No," he replied, "The work is tedious, but I would not leave for that reason." "Is it the celibacy?" he was asked. "No," he replied, "like the others, I am lonely, but I took vows with a full awareness of what I was sacrificing, and I would not leave because of that." "Then what is it, why are you leaving?" his exasperated superior wanted to know. "It's just the whole damn thing," Brother John explained. So it is with the new genetic technologies. They raise no new ethical questions for physicians or patients. There References 1. Andrews LB. Medical Genetics: A Legal Frontier . Chicago, Ill: American Bar Foundation; 1987. 2. Annas GJ, Elias S. The human genome project: social policy and research . Polit Life Sci . 1992;11:245-249. 3. Capron AM, Lappe M, Murray RM, et al. Genetic Counseling: Facts, Values and Norms . New York, NY: Alan R Liss Inc; 1979. 4. Committee for the Study of Inborn Errors of Metabolism . Genetic Screening: Programs, Principles and Research . Washington, DC: National Academy of Sciences; 1973. 5. Fost N. Ethical issues in genetics . Pediatr Clin North Am . 1992;39:79-89. 6. Fost N. Ethical implications of screening asymptomatic individuals . FASEB J . 1992;6:2813-2817. 7. Holtzman N. Proceed With Caution: Predicting Genetic Risks in the Recombinant DNA Era . Baltimore, Md: The Johns Hopkins Press; 1989. 8. Karjala D. A legal research agenda for the Human Genome Initiative . Jurimetrics J Law Sci Technol . 1992;32:i-viii, 1-311. 9. Milunsky A, Annas GJ, eds. Genetics and the Law III . New York, NY: Plenum Press; 1985. 10. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research . Splicing Life: The Social and Ethical Issues of Genetic Engineering With Human Beings . Washington, DC: President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research; 1982. 11. Langfelder EJ, Juengst ET. Ethical, Legal and Social Implications (ELSI) Program: National Center for Human Genome Research , NIH. Polit Life Sci . 1993;12:273-275. 12. Capron AM. Unsplicing the Gordian knot: legal and ethical issues in the 'new genetics .' In: Milunsky A, Annas GJ, eds. Genetics and the Law III . New York, NY: Plenum Press; 1985:23-29. 13. Ingelfinger F. Informed but uneducated consent . N Engl J Med . 1972; 287:466-470.Crossref 14. Wilfond BS, Fost N. The cystic fibrosis gene: medical and social implications for heterozygote detection . JAMA . 1990;263:2777-2783.Crossref 15. Katz J. Experimentation With Human Beings . New York, NY: Russell Sage Foundation; 1972:986-993. 16. Holtzman NA. Anatomy of a trial . Pediatrics . 1977;60:932-934. 17. Holtzman NA. What drives neonatal screening? N Engl J Med . 1991; 325:802-804.Crossref 18. Wiswell TE. Circumcision: an update . Curr Probl Pediatr . 1992;22: 424-431. 19. Faden R, Chwalow AJ, Holtzman NA, Horn SD. A survey to evaluate parental consent as public policy for neonatal screening . Am J Public Health . 1982;72:1347-1352.Crossref 20. Robertson JA, Schulman JD. Pregnancy and prenatal harm to offspring: the case of mothers with PKU . Hastings Cent Rep . 1987;17( (4) ):23-33.Crossref 21. Johnsen D. A new threat to pregnant women's autonomy . Hastings Cent Rep . 1987;17( (4) ):33-40.Crossref 22. Tarasoff v Board of Regents of the University of California, 17 Cal3d 425, 551 P2d 334, 131 Cal Rptr 14 (1976). 23. Odell GB. Therapeutic misadventures in neonatal care . In: Gluck L, ed. Modern Perinatal Medicine . St Louis, Mo: Mosby–Year Book; 1974. 24. Hammond KB, Abman SH, Sokol RJ, Accurso FJ. Efficacy of statewide screening for cystic fibrosis by assay of trypsinogen concentrations . N Engl J Med . 1991;325:769-774.Crossref 25. Farrell PM, Mischler EH. Newborn screening for cystic fibrosis . Adv Pediatr . 1992;39:35-70. 26. Tluczek A, Mischler E, Farrell PM, et al. Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis screening . J Dev Behav Pediatr . 1992;13:181-186.Crossref 27. Tluczek A, Mischler EH, Bowers B, et al. Psychological impact of false positive results when screening for cystic fibrosis . Pediatr Pulmonol . 1991; 7( (suppl) ):29-37.Crossref 28. Li FP, Garber JE, Friend SH, et al. Recommendations on predictive testing for germ line p53 muations among cancer-prone individuals . J Natl Cancer Inst . 1992;84:1156-1160.Crossref 29. US Congress, Office of Technology Assessment . Genetic Tests and Health Insurance: Results of a Survey—Background Paper . Washington, DC: Office of Technology Assessment; 1992. Publication OTA-BP-BA-98. 30. US Congress, Office of Technology Assessment . Genetic Monitoring and Screening in the Workplace . Washington, DC: Office of Technology Assessment; 1992. 31. Billings PR, Kohn MA, deCuevas M, Beckwith J, Alper JS, Natowicz MR. Discrimination as a consequence of genetic testing . Am J Hum Genet . 1992;50:476-482. 32. Levine R. Ethics and Regulation of Clinical Research . 2nd ed. Baltimore, Md: Urban and Schwarzenberg; 1986. 33. Allen DB, Fost N, Blizzard RM. Access to Treatment With Human Growth Hormone: Medical, Ethical and Social Issues . Califon, NJ:Synermed; 1992. 34. Coplan J. Wrongful life and wrongful birth: new concepts for the pediatrician . Pediatrics . 1985;75:65-72. 35. Park v Chessin, 46 NY2d 401, 386 NE2d 807 (1978). 36. Wilfond BS, Fost N. The introduction of cystic fibrosis carrier screening into general practice: policy considerations . Milbank Q . 1992;70:629-659.Crossref 37. Daniels N. Just Health Care . Cambridge, England: Cambridge University Press; 1985. 38. Krimsky S. The corporate capture of academic science and its social costs . In: Milunsky A, Annas GJ, eds. Genetics and the Law III . New York, NY: Plenum Press; 1985:45-55. 39. Faculty of Medicine. Policy on Conflicts of Interest and Commitment . Cambridge, Mass: Harvard University; (March) 22, 1990. 40. Healy BB, Campeau L, Gray R, et al. Conflict of interest guidelines for a multicenter clinical trial of treatment after coronary-artery bypass-graft surgery . N Engl J Med . 1990;320:949-952.Crossref

Journal

American Journal of Diseases of ChildrenAmerican Medical Association

Published: Nov 1, 1993

References