Skip to main content

Advertisement

Log in

Genetics and bioethics: How our thinking has changed since 1969

  • Published:
Theoretical Medicine and Bioethics Aims and scope Submit manuscript

Abstract

In 1969, the field of human genetics was in its infancy. Amniocentesis was a new technique for prenatal diagnosis, and a newborn genetic screening program had been established in one state. There were also concerns about the potential hazards of genetic engineering. A research group at the Hastings Center and Paul Ramsey pioneered in the discussion of genetics and bioethics. Two principal techniques have emerged as being of enduring importance: human gene transfer research and genetic testing and screening. This essay tracks the development and use of these techniques and considers the ethical issues that they raise.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

Notes

  1. See also the follow-up articles by Weiss and Nelson published in the Washington Post on November 21, December 8–10 and 31, 1999; January 31, February 3, September 19, and November 4, 2000. The Senate hearing was printed as [30].

  2. An August 2011 review and meta-analysis also showed that the gender of fetuses can be determined with considerable accuracy by analyzing cell-free fetal DNA. See [49].

References

  1. Ramsey, Paul. 1970. The patient as person: Explorations in medical ethics. New Haven: Yale University Press.

    Google Scholar 

  2. Ramsey, Paul. 1970. Fabricated man. New Haven: Yale University Press.

    Google Scholar 

  3. Jonsen, Albert R. 1998. The birth of bioethics. New York, NY: Oxford University Press.

    Google Scholar 

  4. Callahan, Daniel. 1970. Progress report and report on June 12–14 meeting, July 2, 1970. Veatch: Personal archives of Robert M. Veatch, Washington, DC.

  5. Callahan, Daniel. 1971. Early spring notes, March 24, 1971. Veatch: Personal archives of Robert M. Veatch, Washington, DC.

  6. Lappé, Marc, James M. Gustafson, and Richard Roblin for the Research Group on Ethical, Social and Legal Issues in Genetic Counseling and Genetic Engineering of the Institute of Society, Ethics and the Life Sciences. 1972. Ethical and social issues in screening for genetic disease. New England Journal of Medicine 286(21): 1129–1132.

  7. Walters, LeRoy. 2000. Gene therapy: Overview. In Encyclopedia of ethical, legal, and policy issues in biotechnology, ed. T. Murray, and M. Mehlman, 336–342. New York, NY: Wiley.

    Google Scholar 

  8. McCullough, James M. 1974. Genetic engineering: Evolution of a technological issue: Supplemental report 1. Report prepared for Subcommittee on Science, Research, and Development, 93rd Cong., 2nd sess. Washington, DC: Government Printing Office.

  9. Lederberg, Joshua. 1970. Genetic manipulation. New York Times, Sept 26.

  10. Davis, Bernard D. 1970. Prospects for genetic intervention in man. Science 170(964): 1279–1283.

    Article  Google Scholar 

  11. US Congress. Office of Technology Assessment. 1988. Mapping our genes—The genome projects, how big, how fast? OTA-BA-373. Washington, DC: US Government Printing Office.

    Google Scholar 

  12. Rogers, Stanfield. 1976. Reflections on issues posed by recombinant DNA molecule technology, II. Annals of the New York Academy of Sciences 265: 66–70.

    Article  Google Scholar 

  13. Anderson, W. French. 1972. Genetic therapy. In The new genetics and the future of man, ed. Michael P. Hamilton, 109–124. Grand Rapids: Eerdmans.

    Google Scholar 

  14. Ramsey, Paul. 1972. Genetic therapy: A theologian’s response. In The new genetics and the future of man, ed. Michael P. Hamilton, 157–175. Grand Rapids: Eerdmans.

    Google Scholar 

  15. Friedmann, Theodore, and Richard Roblin. 1972. Gene therapy for human genetic disease? Science 175(4025): 949–955.

    Article  Google Scholar 

  16. Thompson, Larry. 1994. Correcting the code: Inventing the genetic cure for the human body. New York: Simon & Schuster.

    Google Scholar 

  17. Jacobs, Paul. 1980. Human engineering: Pioneer genetic implants revealed. Los Angeles Times, Oct 8.

  18. Mercola, Karen E., and Martin J. Cline. 1980. The potentials of inserting new genetic information. New England Journal of Medicine 303(22): 1297–1300.

    Article  Google Scholar 

  19. Anderson, W. French, and John C. Fletcher. 1980. Gene therapy in human beings: When is it ethical to begin? New England Journal of Medicine 303(22): 1293–1297.

    Article  Google Scholar 

  20. Council of Europe. Parliamentary Assembly. 1982. Recommendation 934 (1982): On genetic engineering. January 26. 22nd Sitting. http://assembly.coe.int/Main.asp?link=/Documents/AdoptedText/ta82/EREC934.htm. Accessed Dec 22, 2011.

  21. US Congress. House. Committee on Science and Technology. 1982. Human genetic engineering: Hearing before the Subcommittee on Investigations and Oversight. 97th Cong. 2nd sess., Nov 16–18. Washington, DC: US Government Printing Office.

  22. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1982. Splicing life: The social and ethical issues of genetic engineering with human beings. Washington, DC: US Government Printing Office.

    Google Scholar 

  23. Walters, LeRoy. 1991. Human gene therapy: Ethics and public policy. Human Gene Therapy 2(2): 115–122.

    Article  Google Scholar 

  24. Blaese, R.M., K.W. Culver, A.D. Miller, et al. 1995. T-lymphocyte directed gene therapy for ADA-SCID: Initial trial results after 4 years. Science 270(5235): 475–480.

    Article  Google Scholar 

  25. Ross, Gail, Robert Erickson, Debra Knorr, et al. 1996. Gene therapy in the United States: A five-year status report. Human Gene Therapy 7(14): 1781–1790.

    Article  Google Scholar 

  26. Orkin, Stuart H., and Arno G. Motulsky. 1995. Report and recommendations of the panel to assess the NIH investment in research on gene therapy. December 7. http://oba.od.nih.gov/oba/rac/panelrep.pdf. Accessed Dec 22, 2011.

  27. Walters, LeRoy. 2000. The oversight of human gene transfer research. Kennedy Institute of Ethics Journal 10(2): 171–174.

    Article  Google Scholar 

  28. Churchill, Larry, Myra Collins, Nancy King, Stephen Pemberton, and Keith Wailoo. 1998. Genetic research as therapy: Implications of “gene therapy” for informed consent. Journal of Law, Medicine and Ethics 26(1): 38–47.

    Article  Google Scholar 

  29. Weiss, Rick, and Deborah Nelson. 1999. Teen dies undergoing experimental gene therapy. Washington Post, Sept 29.

  30. US Congress. Senate. Committee on Health, Education, Labor, and Pensions. 2000. Gene therapy: Is there oversight for public safety? Testimony before the Subcommittee on Public Health. 106th Cong, 2nd sess., Feb 2. Washington: US Government Printing Office.

  31. Cavazzana-Calvo, Marina, Salima Hacein-Bey, Geneviève de Saint Basile, et al. 2000. Gene therapy of human severe combined immunodeficiency (SCID)-X1 disease. Science 288(5466): 669–672.

    Article  Google Scholar 

  32. Hacein-Bey-Abina, Salima, Françoise Le Deist, Frédérique Carlier, et al. 2002. Sustained correction of X-linked severe combined immunodeficiency by ex vivo gene therapy. New England Journal of Medicine 346(16): 1185–1193.

    Article  Google Scholar 

  33. Hacein-Bey-Abina, Salima. 2003. A serious adverse event after successful gene therapy for X-linked severe combined immunodeficiency. New England Journal of Medicine 348(3): 255–256.

    Article  Google Scholar 

  34. Fischer, Alain. 2010. 20 years of gene therapy for SCID. Nature Immunology 11(6): 457–460.

    Article  Google Scholar 

  35. Kay, Mark A. 2011. State-of-the-art gene-based therapies: The road ahead. Nature Reviews: Genetics 12(5): 316–328.

    Article  Google Scholar 

  36. Maguire, Albert M., Francesca Simonelli, Eric A. Pierce, et al. 2008. Safety and efficacy of gene transfer for Leber’s congenital amaurosis. New England Journal of Medicine 358(21): 2240–2248.

    Google Scholar 

  37. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1983. Screening and counseling for genetic conditions: The ethical, social and legal implications of genetic screening, counseling, and education programs. Washington, DC: US Government Printing Office.

    Google Scholar 

  38. Watson, Michael, Michele Lloyd-Puryear, Marie Mann, Piero Rinaldo and R. Rodney Howell, eds. 2006. Newborn screening: Toward a uniform screening panel and system. Genetics in Medicine 8(suppl. 1).

  39. President’s Council on Bioethics. 2008. The changing moral focus of neonatal screening: An analysis by the President’s Council. Washington, DC: US Government Printing Office.

    Google Scholar 

  40. Trotter, Tracy L., Alan R. Fleischman, R. Rodney Howell, and Michele Lloyd-Puryear. 2011. Secretary’s Advisory Committee on heritable disorders in newborns and children response to the President’s Council on bioethics report: The changing moral focus of genetic screening. Genetics in Medicine 13(4): 301–304.

    Article  Google Scholar 

  41. Levy, Paul A. 2010. An overview of newborn screening. Journal of Developmental and Behavioral Pediatrics 31(7): 622–631.

    Article  Google Scholar 

  42. Bell, Callum, Darrell Dinwiddie, Neil Miller, et al. 2011. Carrier testing for severe childhood recessive diseases by next-generation sequencing. Science Translational Medicine 3(65): 65ra4.

    Google Scholar 

  43. Wexler, Alice. 1995. Mapping fate: A memoir of family, risk, and genetic research. Berkeley, CA: University of California Press.

    Google Scholar 

  44. Chen, Sining, and Giovanni Parmigiani. 2007. Meta-analysis of BRCA1 and BRCA2 penetrance. Journal of Clinical Oncology 25(11): 1329–1333.

    Article  Google Scholar 

  45. Power, Derek G., Emily Gloglowski, and Steven M. Lipkin. 2010. Clinical genetics of hereditary colorectal cancer. Hematology/Oncology Clinics of North America 24(5): 837–859.

    Article  Google Scholar 

  46. Tabor, A., C.H.F. Vestergaard, and Ø. Lidegaar. 2009. Fetal loss rate after chorionic villus sampling and amniocentesis: An 11-year national registry study. Ultrasound in Obstetrics and Gynecology 34(1): 19–24.

    Article  Google Scholar 

  47. Benn, Peter, Antoni Borrell, Jenny Crossley, et al. 2011. Aneuploidy screening: A position statement from a committee on behalf of the Board of the International Society for Prenatal Diagnosis, January 2011. Prenatal Diagnosis 31(6): 519–522.

    Article  Google Scholar 

  48. Lo, Y.M. Dennis, K.C. Allen Chan, Hao Sun, et al. 2010. Maternal plasma DNA sequencing reveals the genome-wide genetic and mutational profile of the fetus. Science: Translational Medicine 2(61): 61ra91.

  49. Devanie, Stephanie A., Glenn E. Palomaki, Joan A. Scott, and Diana W. Bianchi. 2011. Noninvasive fetal sex determination using cell-free fetal DNA: A systematic review and meta-analysis. Journal of the American Medical Association 306(6): 627–636.

    Article  Google Scholar 

  50. Jackson, Laird, and Reed E. Pyeritz. 2011. Molecular technologies open new clinical genetic vistas. Science Translational Medicine 3(65): 65ps2.

  51. Simpson, Joe Leigh. 2010. Preimplantation genetic diagnosis at 20 years. Prenatal Diagnosis 30(7): 682–695.

    Article  Google Scholar 

  52. Harper, Joyce, Edith Coonen, Martine De Rycke, et al. 2010. What next for preimplantation genetic screening (PGS)? A position statement from the ESHRE PGD Consortium steering committee. Human Reproduction 25(4): 821–823.

    Google Scholar 

Download references

Acknowledgments

Research for this article was supported in part by grant P41 HG01115 from the ELSI Program of the National Human Genome Research Institute, NIH. My colleague Robert M. Veatch kindly provided archival materials from the Hastings Center.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to LeRoy Walters.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Walters, L. Genetics and bioethics: How our thinking has changed since 1969. Theor Med Bioeth 33, 83–95 (2012). https://doi.org/10.1007/s11017-012-9210-8

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11017-012-9210-8

Keywords

Navigation