Advertisement

From Genetics to Genomics and Beyond

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

Abstract

This chapter discusses a cluster of changes and other issues in the transition from genetics to “genomics” and “proteonomics.” When the first survey was completed in 1985, direct DNA testing was in an experimental stage. Older interactions between genetics and society are in the process of rapid change, especially in affluent nations. At its start and finish (1990–2001), the Human Genome Project (HGP) evoked competing metaphors to convey its impact on society. Alongside praise for the HGP, misplaced hopes, misunderstanding, and mistrust obstruct integration of genetic discoveries into mainstream medicine. If physicians are to use these discoveries in practice, traditional medical ethics needs to refit its “ship of morality” (Benjamin, 2003, 112) for more turbulent seas. Would a code of ethics help the world's geneticists earn more public trust? Or is there a more practical way?

Keywords

Ethical Issue Primary Care Physician Huntington Disease Turner Syndrome Genetic Service 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. Acheson, Louise S., Georgia Wiesner, Stephen Zyzanski, Meredith Goodwin, Kurt Stange Family hi story-taking in community family practice: implications for genetic screening. Genetics in Medicine 2000; 2: 180–Google Scholar
  2. Benjamin, Martin. Philosophy and This Actual World. Lanham: MD, Rowman & Littlefield, 2003.Google Scholar
  3. Bobrow, Martin. Comments. The Wellcome Trust, Sanger Institute. <http://www.sanger.ac.uk?HGP/draft2000, commentary.shtml>.
  4. Collins, Francis S. Contemplating the end of the beginning. Genome Research 2001; 11: 641–643.PubMedCrossRefGoogle Scholar
  5. Collins, Francis S. and Alan E. Guttmacher. A vision for the future of genomics research. Nature 2003; 422: 835–847.PubMedCrossRefGoogle Scholar
  6. Cook-Deegan, Robert M., Amber Johnson, and Carmie Chan. World Survey of Funding for Genomics Research. Final report to the World Health Organization and Global Forum for Health Research, September 2000. Journal of BioLaw and Business Special Supplement 2001. <http://www.stanford.edu/class/siwl98q/genomics >
  7. Cook-Deegan, Robert. The Gene Wars. Science, Politics, and the Human Genome. New York: Norton, 1994.Google Scholar
  8. Costa, Tullia. The Human Genome Project and the Media. Case Study: The Relation Between Genetics and the Media. International Journal on Scientific Communication. 2003; N4. <http://Jekyll.sissa.it/Jekyll_comm/articoli/art04_03_eng.htm>.
  9. Couzin, Jennifer. Choices — and uncertainties — for women with BRCA mutations. Science 2003; 302: 592–593.PubMedCrossRefGoogle Scholar
  10. Doksum, Teresa, Barbara Bernhardt, and Neil A. Holtzman. Does knowledge about the genetics of breast cancer differ between nongeneticist physicians who do or do not discuss or order BRCA testing? Genetics in Medicine 2003; 5: 99–PubMedCrossRefGoogle Scholar
  11. Dreyfuss, Rochelle C. and Dorothy Nelkin. The jurisprudence of genetics. Vanderbilt Law Review 1992; 45: 313–324.PubMedGoogle Scholar
  12. DW-World. De Deutsche Welle, Germany hints at Loosening of Stemcell Law,” October 30, 2003. <http://www.dw-world.de/english/0,3367,1430_A1016499_/_A,00.html >
  13. Fujiki, Norio, Viktor Bulyzhenkov and Zbignew Bankowski (eds). Medical Genetics and Society. Amsterdam: Kugler Publications, 1991.Google Scholar
  14. Geller, Gail, Ellen Tambor, Gary Chase, Karen Hofman, Ruth Faden, Neil Holtzman, Incorporation of genetics in primary care practice. Will physicians do the counseling and will they be directive? Archives of Family Medicine 1993; 2: 1119–Google Scholar
  15. Guttmacher, Alan E. and Francis S. Collins. Genomic medicine — a primer. New England Journal of Medicine 2002; 347: 1512–PubMedCrossRefGoogle Scholar
  16. Harris, Rodney and M. Reid. Medical genetic services in 31 countries. An overview. European Journal of Human Genetics 1997; 5: S2.Google Scholar
  17. Holtzman, Neil A. Are genetic tests adequately regulated? Science 1999; 286: 409.PubMedCrossRefGoogle Scholar
  18. Jasney, Barbara and Donald Kennedy. The human genome. Science 2001; 291: 115CrossRefGoogle Scholar
  19. Jones, Steve. Genetics in Medicine: Real Promises, Unreal Expectations. One Scientist's Advice to Policymakers in the United Kingdom and the United States. New York: Milbank Memorial Fund, 2000.Google Scholar
  20. Jonsen, Albert R. The Birth of Bioethics. New York: Oxford University Press, 1998, pp. 336–3Google Scholar
  21. Julian-Reynier, Claire, F. Elsinger, Moatti, J.P, Hagay Sobel. French physicians' knowledge about hereditary breast/ovarian cancer: the need for continuing vocational training in genetics. Community Genetics 1999; 2: 165–172.PubMedCrossRefGoogle Scholar
  22. Keller, Evelyn F. Refiguring Life: Metaphors of Twentieth Century Biology. New York: Columbia University Press, 1995.Google Scholar
  23. King, Mary-Claire, Joan Marks, Jessica Mandeli, for the New York Breast Cancer Study Group. Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2. Science 2003; 302: 643–646.PubMedCrossRefGoogle Scholar
  24. Lapham, Evelyn V., Chahira Kozma, Joan Weiss, Judith Benkendorf, Mary Ann Wilson. The gap between practice and education of health professionals: HuGEM survey results. Genetics in Medicine 2000; 2: 226–231.PubMedCrossRefGoogle Scholar
  25. McLean, Sheila A.M. and Dieter Giesen. Legal and ethical considerations of the Human Genome Project. Medical Law International 1994; 1: 159–175.PubMedCrossRefGoogle Scholar
  26. Motulsky, Arno. G. If I had a gene test, what would I have and who would I tell? Lancet 1999; 354: 35–37.CrossRefGoogle Scholar
  27. Nelkin, Dorothy and Susan M. Lindee. The DNA Mystique: The Gene as a Cultural Icon. New York: Freeman, 1995, pp. 34–35.Google Scholar
  28. O'Neill, Onora. Autonomy and Trust in Bioethics. Cambridge: Cambridge University Press, 2002a.CrossRefGoogle Scholar
  29. O'Neill, Onora. A Question of Trust. Cambridge: Cambridge University Press, 2002Google Scholar
  30. Patenaude, Andrea F., Alan E. Guttmacher, and Francis S. Collins. Genetic testing and psychology. New roles, new responsibilities. American Psychologist 2002; 57: 271–282.PubMedCrossRefGoogle Scholar
  31. Petsko, Gregory A. The Rosetta stone. Genome Biology comment 2001; 2: 1007.1–1007.2.Google Scholar
  32. Pinker, Stephen. The Blank Slate. The Modern Denial of Human Nature. New York: Viking, 2002.Google Scholar
  33. Sen, Amartya. East and West: the reach of reason. New York Review of Books 2000; 33–37.Google Scholar
  34. Shiloh, Shoshana. Decision-making in the context of genetic risk. In Theresa Marteau and Martin Richards (eds), The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge: Cambridge University Press, 1996, pp. 82–103.CrossRefGoogle Scholar
  35. Watson, James D. DNA: The Future of Life. New York: Knopf, 2003.Google Scholar
  36. Wertz, Dorothy C. and John C. Fletcher. Proposed: an international code of ethics for medical genetics. Clinical Genetics 1993; 44: 37–43.PubMedCrossRefGoogle Scholar
  37. Wertz, Dorothy C., John C. Fletcher, and Kare Berg. Review of Ethical Issues in Medical Genetics. Report of Consultants to WHO. Geneva: World Health Organization Human Genetics Programme, 2001.Google Scholar
  38. World Health Organization. Proposed International Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetic Services. Geneva: WHO, 1998.Google Scholar

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

Personalised recommendations