Germline Genetic Modification

For several decades, scientists and ethicists have considered the possibility of altering genes at the beginning of human life. Human germline genetic modification began to attract widespread attention as early as the 1960s (Evans 2002: 55–57). At that time, scientists and scholars began examining the benefits and harms that could come from attempting to alter genes at the earliest stage of human development.

This chapter describes the general arguments for and against human germline modification, but it analyzes germline genetic modifications from a vantage point that differs from most ethics and policy discussions. Writers addressing the topic often limit their discussions to the benefits and harms that could materialize if germline modifications were widely available. In this chapter, however, I consider the technology as it stands today. The question for contemporary society is not whether it would be a good or a bad thing if germline modifications were performed in humans. Instead, today’s ethical inquiry should focus on whether to pursue human germline genetic intervention as a research goal. For us, the relevant questions are the following: What is the potential value of research aimed at human germline genetic modification and what price would be paid in attempting to develop the technology?

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References

• American Association for the Advancement of Science, AAAS (2003) AAAS President Calls to Restore American Health System.http://www.eurekalert.org/pub_releases/2003-02/aaft-apc020303php Accessed February 19, 2003
• Blaese R M (2003) Germ line modification in clinical medicine: is there a case for intentional or unintended germ line changes? In: Chapman A R, Frankel M S (eds) Designing Our Descendants: The Promises and Perils of Genetic Modifications. Johns Hopkins University Press, Baltimore, MD Google Scholar
• Burke W (2003) Genomics as a probe for disease biology. New England Journal of Medicine 349: 969–974 ArticlePubMedCASGoogle Scholar
• Callahan D (2003) What Price Better Health? Hazards of the Research Imperative. University of California Press, Berkeley, CA/Los Angeles, CA Google Scholar
• Capecchi M (2000) Human germline gene therapy: how and why. In: Stock G, Campbell J (eds) Engineering the Human Germline. Oxford University Press, New York Google Scholar
• Chapman A (2003) The implications of inheritable genetic modifications for justice. In: Chapman A R, Frankel M S (eds) Designing Our Descendants: The Promises and Perils of Genetic Modifications. Johns Hopkins University Press, Baltimore, MD Google Scholar
• Couzin J (2005) To what extent are genetic variation and personal health linked? Science 309: 81 ArticlePubMedCASGoogle Scholar
• Culver K W (2003) Gene repair, genomics, and human germ line modification. In: Chapman A R, Frankel M S (eds) Designing Our Descendants: The Promises and Perils of Genetic Modifications. Johns Hopkins University Press, Baltimore, MD Google Scholar
• Danks D (1994) Germ-line gene therapy: no place in treatment of genetic disease. Human Gene Therapy 5: 151–152 ArticlePubMedCASGoogle Scholar
• Dresser R (2001) When Science Offers Salvation: Patient Advocacy and Research Ethics. Oxford University Press, New York Google Scholar
• Dresser R (2004a) Genetic modification of preimplantation embryos: toward adequate human research policies. Milbank Quarterly 82: 195–214 ArticleGoogle Scholar
• Dresser R (2004b) Designing babies: human research issues. IRB: Ethics & Human Research 26(5): 1–8 ArticleGoogle Scholar
• Evans C H (2003) Germ line gene therapy: can we do it, do we need it, where do we start, and where might it lead? In: Chapman A R, Frankel M S (eds) Designing Our Descendants: The Promises and Perils of Genetic Modifications. Johns Hopkins University Press, Baltimore, MD Google Scholar
• Evans J (2002) Playing God? Human Genetic Engineering and the Rationalization of the Public Bioethical Debate. University of Chicago Press, Chicago, IL Google Scholar
• Frankel M S, Chapman A R (2000) Human Inheritable Genetic Modifications: Assessing Scientific, Ethical, Religious, and Policy Issues. Available athttp://www.aaas.org/spp/dspp/sfrl/germline/main.htm Accessed April 24, 2003
• Friedmann T (2003) Approaches to gene transfer to the mammalian germ line. In: Chapman A R, Frankel M S (eds) Designing Our Descendants: The Promise and Perils of Genetic Modification. Johns Hopkins, Baltimore, MD Google Scholar
• Genetics and Public Policy Center (2004) Preimplantation Genetic Diagnosis: A Discussion of Challenges, Concerns, and Preliminary Policy Options Related to the Genetic Testing of Human Embryos. Available athttp://www.DNApolicy.org Accessed April 25, 2006
• Genetics and Public Policy Center (2005) Human Germline Genetic Modification: Issues and Options for Policymakers. Available athttp://www.DNApolicy.org Accessed August 25, 2005
• Gordon J (1999) Genetic enhancement in humans. Science 283: 2023–2024 ArticlePubMedCASGoogle Scholar
• Harris J (1992) Wonderwoman and Superman: The Ethics of Human Biotechnology. Oxford University Press, Oxford Google Scholar
• Hood L (2000) The human genome project-launch pad for human genetic engineering. In: Stock G, Campbell J (eds) Engineering the Human Germline. Oxford University Press, New York Google Scholar
• Institute of Medicine (1998) Scientific Opportunities and Public Needs: Improving Priority Setting and Public Input at the National Institutes of Health. National Academy Press, Washington, DC Google Scholar
• Kimmelman J (2005) Recent developments in gene transfer: risk and ethics. BMJ 330: 79–82 ArticlePubMedCASGoogle Scholar
• Koshland D (2000) Ethics and safety. In: Stock G, Campbell J (eds) Engineering the Human Germline. Oxford University Press, New York Google Scholar
• Lenfant P (2003) Clinical research to clinical practice — lost in translation? New England Journal of Medicine 349: 868–874 ArticlePubMedGoogle Scholar
• National Academy of Sciences (2002) Scientific and Medical Aspects of Human Reproductive Cloning. National Academy Press, Washington, DC Google Scholar
• National Institutes of Health (1997) Setting Research Priorities at the National Institutes of Health. NIH Publication, Bethesda MD: 97–4265 Google Scholar
• Parens E (1995) Should we hold the (human) germline? Journal of Law, Medicine & Ethics 23: 173–176 ArticleCASGoogle Scholar
• Pennisi E (2005) Why do humans have so few genes? Science 309: 80 ArticlePubMedCASGoogle Scholar
• Pinker S (1 June 2003) Better babies? Why genetic enhancement is too unlikely to worry about. Boston Globe: D1 Google Scholar
• Resnik D B (2002) Bioethics of gene therapy. In: Encyclopedia of Life Sciences. Nature/ MacMillan, London Google Scholar
• Resnik D B, Steinkraus H B, Langer P J (1999) Human Germline Gene Therapy: Scientific, Moral and Political Issues. R. G. Landes, Austin, TX Google Scholar
• Robertson J A (2003) Extending preimplantation genetic diagnosis: the ethical debate. Human Reproduction 18: 465–471 ArticlePubMedGoogle Scholar
• Silver L (2000) Reprogenetics: how reproductive and genetic technologies will be combined to provide new opportunities for people to reach their reproductive goals. In: Stock G, Campbell J (eds) Engineering the Human Germline. Oxford University Press, New York Google Scholar
• Shanks P (2005) Human Genetic Engineering: A Guide for Activists, Skeptics, and the Very Perplexed. Nation Books/Avalon, New York Google Scholar
• Stock G (2002) Redesigning Humans: Our Inevitable Genetic Future. Houghton Mifflin, New York Google Scholar
• Stock G, Campbell J (2000a) Introduction: an evolutionary perspective. In: Stock G, Campbell J (eds) Engineering the Human Germline. Oxford University Press, New York Google Scholar
• Stock G, Campbell J (2000b) The road ahead: a panel discussion In: Stock G, Campbell J (eds) Engineering the Human Germline. Oxford University Press, New York Google Scholar
• Stock G, Campbell J (2000c) Other voices. In: Stock G, Campbell J (eds) Engineering the Human Germline. Oxford University Press, New York Google Scholar
• Taubes G (2002) The strange case of chimeraplasty. Science 298: 2116–2120 ArticlePubMedCASGoogle Scholar
• Tuma R S (2003) AAAS President's Surprise Plea for Low-Tech Research. BioMedNet News. Available athttp://news.bmn.com/news/story
• Wade N (2 September 1999) Scientists create a smarter mouse. New York Times: A1 Google Scholar
• Walters L, Palmer J G (1997) The Ethics of Human Gene Therapy. Oxford University Press, New York Google Scholar
• Waters B (2002) European Scholars Support Development of Germ Line Modification. Available athttp://www.eurekalert.org/pub_releases/2002-12/sari-ess121302.php Accessed April 4, 2003
• Weiss R (29 January 2001) Study: rodents' higher IQ may come at painful price. Washington Post: A2 Google Scholar
• Zerhouni E (2003) The NIH roadmap. Science 302: 63–64, 72 ArticlePubMedCASGoogle Scholar

1. Rebecca Dresser