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Gene Therapy: Ethical Issues

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Abstract

To discern the ethical issues involved incurrent gene therapy research, to explore theproblems inherent in possible future genetherapies, and to encourage debate within thescientific community about ethical questionsrelevant to both, we surveyed American Societyof Human Genetics scientists who engage inhuman genetics research. This study of theopinions of U.S. scientific experts about theethical issues discussed in the literature ongene therapy contributes systematic data on theattitudes of those working in the field as wellas elaborative comments. Our survey finds thatrespondents are highly supportive of thepotential use of somatic cell gene therapy tocure serious diseases in adults and children aswell as prospective offspring. A clearmajority, however, believe that using suchgenetic techniques for enhancement purposes isunacceptable. Delineating the line betweendisease/disorder and improvement/enhancementposes a problem not easily resolved and oneconducive to the growth of slippery-slopeapprehensions. The majority of respondents alsoadvocate germ-line therapy, in theory at least,and under similar restrictions, but theyrecognize the roadblock that the existence ofunanticipated negative consequences currentlypresents. Another complex matter involvestrying to determine appropriate reasons forchoosing target diseases for research, forwhich the dichotomy between rare single-geneand common multifactorial diseases reveals anongoing dilemma.

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REFERENCES

  1. Adams C. NIH office seeks to increase disclosure of adverse reactions to gene therapy. Wall Street Journal 1999; 1 Nov: B2.

  2. American Society of Human Genetics. Statement on gene therapy. Amer Jour Human Genetics 2000; 67: 272–273.

    Google Scholar 

  3. Anderson WF. Human gene therapy. Nature 1998; 392(supplement): 25–29.

    Google Scholar 

  4. Anderson WF. The best of times, the worst of times. Science 2000; 288: 627–629.

    Google Scholar 

  5. Appleyard B. Brave New Worlds: Staying Human in the Genetic Future. New York: Viking, 1998.

    Google Scholar 

  6. Beauchamp T, Childress J. Principles of Biomedical Ethics. Oxford: Oxford, 2001.

    Google Scholar 

  7. Clinton B. Science in the 21st century. Science 1997; 276: 1951.

    Google Scholar 

  8. Couzin, J. RAC confronts in utero gene therapy proposals. Science 1998; 282: 27.

    Google Scholar 

  9. Daniels N. The human genome project and the distribution of scarce medical resources. In: Murray T, Rothstein MA, Murray RF, eds. The Human Genome Project and the Future of Health Care. Indianapolis: Indiana University, 1996: 173–195.

    Google Scholar 

  10. Fisher LM. Gene therapy offering hope for hemophiliacs. New York Times 1999; 7 Dec: A21.

  11. Fox JL. Gene therapy experts ponder readiness for enhancements. Nature Biotechnology 1999; 15: 1236–1237.

    Google Scholar 

  12. Fox JL. Scrutiny of gene therapy broadens, intensifies. Nature Biotechnology 2000; 18: 377.

    Google Scholar 

  13. Frankel M, Chapman A. Human Inheritable Genetic Modifications: Assessing Scientific, Ethical, Religious, and Policy Issues. Washington, DC: AAAS, 2000.

    Google Scholar 

  14. Frankel M, Chapman A. Facing inheritable genetic modifications. Science 2001; 292: 1303.

    Google Scholar 

  15. Friedmann T. Overcoming the obstacles to gene therapy. Scientific American 1997; 276: 96–101.

    Google Scholar 

  16. Friedmann T, ed. The Development of Human Gene Therapy. Cold Spring Harbor, NY: Cold Spring Harbor Lab, 1999.

  17. Gene therapy companies report some success. Genetic Engineering News 2000; 13: 56–57.

  18. Gene therapy's trials. Nature 2000; 405: 599.

  19. Gordon J. Genetic enhancement in humans. Science 1999; 283: 2023–2024.

    Google Scholar 

  20. Hilts PJ. FDA says researchers failed to report a second death linked to gene therapy. New York Times 2000; 4 May: A20.

  21. Juengst ET. Germ-line gene therapy: Back to basics. Journal of Medicine and Philosophy 1991; 16: 587–592.

    Google Scholar 

  22. Juengst ET. What does enhancement mean? In: Parens E, ed. Enhancing Human Traits. Washington, DC: Georgetown University, 1998: 29–47.

    Google Scholar 

  23. Kolata G. $50,000 offered to tall, smart egg donor. New York Times 1999; 3 Mar: A10.

  24. Kolata G. Scientists report the first success of gene therapy. New York Times 2000; 28 Apr: A1,16.

  25. Lappé M. Ethical issues in manipulating the human germ line. Journal of Medicine and Philosophy 1991; 16: 621–639.

    Google Scholar 

  26. Lehrman S. Virus treatment questioned after gene therapy death. Nature 1999; 401: 517–518.

    Google Scholar 

  27. Leiden JM. Gene therapy enters adolescence. Science 1999; 285: 1215–1216.

    Google Scholar 

  28. Lemonick MD. Designer babies. Time 1999; 11 Jan: 64–66.

  29. Marshall E. Less hype, more biology needed for gene therapy. Science 1995; 270: 1751.

    Google Scholar 

  30. Marshall E. Gene therapy on trial. Science 2000; 288: 951–957.

    Google Scholar 

  31. McGee G. The Perfect Baby: A Pragmatic Approach to Genetics. Lanham, Md: Rowman & Littlefield, 1997.

    Google Scholar 

  32. Murray T. The genome and access to health care. In: Murray T, Rothstein MA, Murray RF, eds. The Human Genome Project and the Future of Health Care. Indianapolis: Indiana University, 1996: 209–223.

    Google Scholar 

  33. Nash M. The bad and the good. Time 2000; 14 Feb: 67.

  34. National Center for Genome Resources (NCGR). National Survey of Public and Stakeholders Attitudes and Awareness of Genetic Issues. Sante Fe, NM: Genetics and Public Issues Program, 1998.

    Google Scholar 

  35. National Human Genome Research Institute (NHGRI). Ethical, Legal, and Social Implications of the Human Genome Project. Bethesda, MD: NHGRI, 1997.

    Google Scholar 

  36. Nelkin D. Exaggerated claims for gene therapy might lead to cynicism should promises falter or fail. Genetic Eng News 1996; 9: 30–32.

    Google Scholar 

  37. Parens E, ed. Enhancing Human Traits: Ethical and Social Implications. Washington, DC: Georgetown University, 1998.

  38. Pollack A. Gene therapy's focus shifts from rare illnesses. New York Times 1998; 11 Aug: F1,6.

    Google Scholar 

  39. Rabino I. How human geneticists in U.S. view commercialization of the human genome project. Nature Genetics 2001; 29: 15–16.

    Google Scholar 

  40. Rabino I. Genetic testing and its implications: Human genetics researchers grapple with ethical issues. Sci, Tech and Human Values (in press).

  41. Reiss M, Straughan R. Improving Nature? The Science and Ethics of Genetic Engineering. Cambridge: Cambridge University, 1996.

    Google Scholar 

  42. Rosenberg LE, Schechter A. Gene therapist, heal thyself. Science 2000; 287: 1751.

    Google Scholar 

  43. Shinn R. Family relationships and social policy: an ethical inquiry. In: Franklin M, Teich A, eds. The Genetic Frontier: Ethics, Law, and Policy. Washington, DC: AAAS, 1994: 9–23.

    Google Scholar 

  44. Singer E, Corning A, Lamias M. The polls - trends: genetic testing, engineering, and therapy; awareness and attitudes. Public Opinion Quar 1998; Winter: 633–664.

  45. Smaglik P. Congress gets tough with gene therapy. Nature 2000; 403: 583–584.

    Google Scholar 

  46. Smaglik P. NIH tightens up monitoring of gene-therapy mishaps. Nature 2000; 404: 5.

    Google Scholar 

  47. Smaglik P. Genome leaders told to keep their eyes on the main prize. Nature 2000; 404: 111.

    Google Scholar 

  48. Stolberg GS. The biotech death of Jesse Gelsinger. New York Times Magazine 1999; 28 Nov: 136–140, 149-150.

  49. Stolberg GS. A death puts gene therapy under increasing scrutiny. New York Times 1999; 4 Nov: A24.

  50. Stolberg GS. US moves to require disclosure of gene tests. New York Times 1999; 30 Oct: A10.

  51. Stolberg GS. A genetic future both tantalizing and disturbing. New York Times 2000; 1 Jan: F7.

  52. Stolberg GS. Despite ferment, gene therapy progresses. New York Times 2000; 6 Jun: F1,4.

  53. Stolberg GS. Teenager's death is shaking up field of human gene-therapy experiments. New York Times 2000; 27 Jan: A20.

  54. Tudge C. Cloning? get used to it. Independent 1998; 25 Jan: 5.

  55. Verma IM, Somia N. Gene therapy - promises, problems and prospects. Nature 1997; 389: 239–242.

    Google Scholar 

  56. Wade N. Death leads to concerns for future of gene therapy. New York Times 1999; 30 Sept: A22.

  57. Wade N. Gene therapy passes important test, in monkeys. New York Times 1999; 23 Feb: F1,4.

  58. Wade N. Patient dies during a trial of gene therapy. New York Times 1999; 29 Sept: A24.

  59. Wade N. Hint of success seen for gene therapy. New York Times 2000; 2 Mar: A20.

  60. Wadman M. NIH launches discussion of in utero gene therapy. Nature 1998; 395: 420.

    Google Scholar 

  61. Wadman M. Gene therapy pushes on, despite doubts. Nature 1999; 397: 94.

    Google Scholar 

  62. Wadman M. NIH under fire over gene-therapy trials. Nature 2000; 403: 237.

    Google Scholar 

  63. Walters L, Palmer J. The Ethics of Human Gene Therapy. Oxford: Oxford University, 1997.

    Google Scholar 

  64. Wolpert L. Is science dangerous? Nature 1999; 398: 281–282.

    Google Scholar 

  65. Wright R. Who gets the good genes? Time 1999; 11 Jan: 67.

  66. Zanjani ED, Anderson WF. Prospects for in utero human gene therapy. Science 1999; 285: 2084–2087.

    Google Scholar 

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Rabino, I. Gene Therapy: Ethical Issues. Theor Med Bioeth 24, 31–58 (2003). https://doi.org/10.1023/A:1022967623162

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  • DOI: https://doi.org/10.1023/A:1022967623162

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