Moral Priorities, Cases, and Practices in Medical Genetics

  • Dorothy C. Wertz
  • John C. Fletcher
Part of the International Library of Ethics, Law, and the New Medicine book series (LIME, volume 17)


The goal of this discussion is to promote dialogue in forums for geneticists and policy makers. Examining ethical issues in a field like medical genetics is comparable to navigation and repairs during a sea journey (Benjamin, 2003, 112). After locating position, the crew must alter or maintain direction. Faults in the structure of the ship or equipment that make it unseaworthy or unprepared for trouble must be corrected. These corrections have to be done on a ship already underway. There are different priorities, but all are important. In ethics, as in all human ways of knowing, the ship cannot return to port for refitting (Benjamin, 2003, 112) once the journey has started.


Genetic Counseling Prenatal Diagnosis Medical Genetic Global Perspective Genetic Service 
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  1. American Medical Association Council on Ethical and Judicial Affairs. Testing Children for Genetic Status. Code of Medical Ethics, Report 66. Chicago, IL: AMA, 1995.Google Scholar
  2. American Society of Human Genetics Board of Directors and American College of Medical Genetics Board of Directors. Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics 1995; 57: 1233.Google Scholar
  3. American Society of Human Genetics. Professional disclosure of familial genetic information. American Journal of Human Genetics 1998; 62: 474–483.CrossRefGoogle Scholar
  4. American Society of Human Genetics Social Issues Committee and the American College of Medical Genetics, Social, Ethical, and Legal Issues Committee (ASGH and ACMG). Genetic testing in adoption. American Journal of Human Genetics 2000; 66(3): 761–767.CrossRefGoogle Scholar
  5. Arras, John D. The Owl and the Caduceus. Does bioethics need philosophy? In Franklin G. Miller, John C. Fletcher, and James M. Humber (eds), The Nature and Prospect of Bioethics: Interdisciplinary Perspectives. Totowa, NJ: Humana Press, 2003, pp. 1–42.CrossRefGoogle Scholar
  6. Asch, Adrienne. Prenatal diagnosis and selective abortion: a challenge to practice and policy. American Journal of Public Health 1999; 89: 1649–1657.PubMedCrossRefGoogle Scholar
  7. Beauchamp, Tom L. and James F Childress. Principles of Biomedical Ethics, 5th edn. New York: Oxford University Press, 2001.Google Scholar
  8. Beauchamp, Tom L. A defense of the common morality. Kennedy Institute Journal of Ethics 2003; 13.3: 259–274.CrossRefGoogle Scholar
  9. Beecher, Henry K. Ethical problems created by the hopelessly unconscious patient. New England Journal of Medicine 1968; 278: 1425–1430.PubMedCrossRefGoogle Scholar
  10. Benjamin, Martin. Between subway and spaceship: practical ethics at the outset of the twenty-first century. Hastings Center Report 2001; 31.4: 24–31.PubMedCrossRefGoogle Scholar
  11. Benjamin, Martin. Philosophy and This Actual World. Lanham: MD, Rowman & Littlefleld, 2003.Google Scholar
  12. Brenner, Sidney. Humanity as the model system. Science 2003; 302: 533.PubMedCrossRefGoogle Scholar
  13. Buber, Martin. Between Man and Man. Translated by Ronald G. Smith. New York: Macmillan, 1965.Google Scholar
  14. Buchanan, Allen E. Is there a medical profession in the house? In Roy G. Spece, Jr., David S. Shimm, and Allen E. Buchanan (eds), Conflict of Interest in Clinical Practice and Research. New York: Oxford University Press, 1996, pp. 105–136.Google Scholar
  15. Callahan, Daniel. Bioethics. In Warren T. Reich (ed.), Encyclopedia of Bioethics, 2nd edn. New York: Simon & Schuster MacMillan, 1995, pp. 256–274.Google Scholar
  16. Commission on Genetic Resources for Food and Agriculture (CGFRA). Code of Conduct on Biotechnology as it Relates to Genetic Resources for Food and Agriculture, 1991.Google Scholar
  17. Coale, Ansley J. Excess female mortality and the balance of the sexes in the population: an estimate of the number of ‘missing females’. Population and Development Review 1991, 517–523.Google Scholar
  18. Collins, Francis S. and James D. Watson. Genetic discrimination: Time to act. Science 2003; 302(5646): 795.CrossRefGoogle Scholar
  19. Council of Regional Networks for Genetics Services (CORN) Committee on Ethics. Code of ethical principles for genetic professionals: an explication. American Journal of Medical Genetics 1996; 65: 179–1CrossRefGoogle Scholar
  20. Daniels, Norman. Justice and Justification: Reflective Equilibrium in Theory and Practice. Cambridge and New York: Cambridge University Press, 1996.CrossRefGoogle Scholar
  21. Dewey, John. Human Nature and Conduct. Carbondale, IL:& Southern Illinois University Press, 1988.Google Scholar
  22. Fox, Renee C. and Judith P. Swazey. Medical morality is not bioethics. Medical ethics in China and the United States. Perspectives in Biology and Medicine 1984; 27: 336–360.PubMedGoogle Scholar
  23. Genetic Interest Group. The genetic testing of children. GIG Response to the Clinical Genetics Society Report. London: GIG, 1995.Google Scholar
  24. Glendon, Mary Ann. A World Made New: Eleanor Roosevelt and the Universal Declaration of Human Rights. New York: Random House, 2001.Google Scholar
  25. Green, Ronald M. Parental autonomy and the obligation not to harm one's child genetically. Journal of Law, Medicine, and Ethics 1997; 25(1): 5–15.PubMedCrossRefGoogle Scholar
  26. Hall, Mark A. and Stephen Rich. Laws restricting health insurers' use of genetic information: impact on genetic discrimination. American Journal of Human Genetics 2000; 66: 293–307.PubMedCrossRefGoogle Scholar
  27. Harris, Rodney and Margaret Reid. Medical genetic services in 31 countries: an overview. European Journal of Human Genetics 1991; 5Google Scholar
  28. Harris, John. Clones, Genes, and Immortality: Ethics and the Genetic Revolution. New York: Oxford University Press, 1998.Google Scholar
  29. House of Commons. Select Committee on Science and Technology. Report on Genetics and Insurance. HC 174, 2001.Google Scholar
  30. Hsia, Y Edward. The genetic counselor as information giver. In Alexander Capron, Mark Lappe, and Robert Murray, et al. (eds), Genetic Counseling: Facts, Values, and Norms. New York: Alan R. Liss, 1979, pp. 169–186Google Scholar
  31. Human Genome Organization Ethics Committee (HUGO). Genetic Benefit Sharing. Science 2000; 290: 49. <>.Google Scholar
  32. Institute of Medicine, Committee on Assessing Genetic Risks. Assessing Genetic Risks. Washington, DC: National Academy Press, 1994, p. 276.Google Scholar
  33. Japanese Society of Human Genetics. Guidelines for Genetic Counseling and Prenatal Diagnosis, 1995.Google Scholar
  34. Jennett, Bryan and Fred Plum. Persistent vegetative state after brain damage. A syndrome in search of a name. Lancet 1972; 1(7753): 734–737.Google Scholar
  35. McCullough, Lawrence B. and Frank A. Chevenak. Ethics in Obstetrics and Gynecology. New York: Oxford University Press, 1994, p. 210.Google Scholar
  36. Kitcher, Philip. The Lives to Come. The Genetic Revolution and Human Possibilities. New York: Simon & Schuster, 1996.Google Scholar
  37. Lapham, E. Virginia, Chahira Kozma, Joan Weiss, Judith Benkendorf, Mary Ann Wilson. Genetic discrimination: perspectives of consumers. Science 1996; 274: 621–624.PubMedCrossRefGoogle Scholar
  38. Mahowald, Mary Briody. Genes, Women, Equality. New York: Oxford University Press, 2000, p. 121.Google Scholar
  39. Miller, Bruce. Autonomy and the refusal of lifesaving treatment. Hastings Center Report 11(4): 22–28, 1981.PubMedCrossRefGoogle Scholar
  40. Moss, Simeon. An alarming trend in gender equality. Cornell Chronicle 32(32); 2001: p. 1.Google Scholar
  41. Merikangas, Kathleen R. and Neil Risch. Genomic priorities and public health. Science 2003(5645): 599–601.Google Scholar
  42. National Society of Genetic Counselors. Prenatal and childhood testing for adult-onset disorders. Perspectives in Genetic Counseling 1995; 17: 5.Google Scholar
  43. O'Neill, Onora. A Question of Trust. Cambridge: Cambridge University Press, 2002.Google Scholar
  44. Overall, Christine. Ethics and Human Reproduction. Boston: Allen and Unwin, 1987, p. 27.Google Scholar
  45. Peterson, Emily A, Kara Milliran, Karen Lewis, Susan Goold, Sofia Merajver. Health insurance and discrimination concerns and BRCA 1/2 testing in a clinic population. Cancer Epidemiology Biomarkers Prevention 2002; 11(1): 79–89.Google Scholar
  46. President's Council on Bioethics (2003). Ethical aspects of sex control. (Staff Working Paper). <>.
  47. Rawls, John. A Theory of Justice. Cambridge, MA: Harvard University Press, 1971.Google Scholar
  48. Reilly, Philip R. The Surgical Solution: A History of Involuntary Sterilization in the United States. Baltimore: Johns Hopkins University Press, 1991.Google Scholar
  49. Reilly, Philip R. gLaws to regulate the use of genetic information. In Rothstein, Mark A. (ed.), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven: Yale University Press, 1997, pp. 369–391.Google Scholar
  50. Robertson, John A. Pre-conception sex selection. American Journal of Bioethics 2001; 1(1): 2–9.PubMedCrossRefGoogle Scholar
  51. Ross, Lainey F. Disclosing misattributed paternity. Bioethics 1996; 10: 114–130.PubMedCrossRefGoogle Scholar
  52. Savulescu, Julian. Sex selection: the case for. Medical Journal of Australia 1999; 171: 373–375.PubMedGoogle Scholar
  53. Sen, Amartya. East and West: the reach of reason. New York Review of Books 2000; 47(12): 20–26.Google Scholar
  54. Sen, Amartya. More than 100 Million Women are Missing. New York Review of Books 1990; 37(20): 61–66.Google Scholar
  55. Sharma, Dinesh C. Widespread concern over India's missing girls. Lancet 2003; 362: 1553.PubMedCrossRefGoogle Scholar
  56. Shimm, David S. and Roy G. Spece, Jr. Ethical requirements of physicians' roles. In Roy G. Spece, Jr., David S. Shimm, and Allen E. Buchanan (eds), Conflict of Interest in Clinical Practice and Research. New York: Oxford University Press, 1996Google Scholar
  57. Toulmin, Stephen. Human Understanding. The Collective Use and Evolution of Concepts. Princeton, NJ: Princeton University Press, 1972Google Scholar
  58. United Nations. The World's Women: Trends and Statistics 1970-1990. New York: United Nations, 1991.Google Scholar
  59. United Nations Environment Programme (UNEP). Convention on Biological Diversity, Article 1, 1992.Google Scholar
  60. Wertz, Dorothy C. and Fletcher, John C. Fatal knowledge? Prenatal diagnosis and sex selection. Hastings Center Report 1989; 19(3): 21–27.PubMedCrossRefGoogle Scholar
  61. Wertz, Dorothy C., James M. Rosenfleld, Susan R. Janes, and Richard W Erbe. Attitudes toward abortion among parents of children with cystic fibrosis. American Journal of Public Health 1991; 81: 991–996CrossRefGoogle Scholar
  62. Wertz, Dorothy C. Drawing lines: notes for policymakers. In Erik Parens and Adrienne Asch (eds), Prenatal Diagnosis and Disability Rights. Washington DC: Georgetown University Press, 2000, pp. 261–287.Google Scholar
  63. Wertz, Dorothy C., John C. Fletcher and Kare Berg. Review of Ethical Issues in Medical Genetics. Geneva: WHO, 2001.Google Scholar
  64. Wertz, Dorothy C. and Bartha M. Knoppers. ’serious’ genetic disorders: can or should they be defined? Arne rican Journal of Medical Genetics 2002; 108: 29–35.CrossRefGoogle Scholar
  65. Wittgenstein, Ludwig. On Certainty 1969, § 341.Google Scholar
  66. Wolpe, Paul R. The triumph of autonomy in American bioethics: a sociological view. In Raymond DeVries and Janardia Subedi (eds), Bioethics and Society: Constructing the Ethical Enterprise, Englewood Cliffs, NJ: Prentice-Hall, 1998, pp. 38–59.Google Scholar
  67. World Health Organization, Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services. Geneva: WHO, 1998.Google Scholar
  68. Zitner, Aaron. Senate blocks genetic discrimination. Los Angeles Times 2003; A-1. < 5,1,6733328. story ?coll=la-news-a_section >.

Copyright information

© Springer Science+Business Media Dordrecht 2004

Authors and Affiliations

  • Dorothy C. Wertz
    • 1
  • John C. Fletcher
    • 2
  1. 1.University of Massachusetts Medical School and Shriver CenterWalthamUSA
  2. 2.University of Virginia School of MedicineCharlottesvilleUSA

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