Genetic Ethics

Overview

The genetic revolution is changing the very nature of medicine. Advances in genetics and genomics have opened the possibility for the increased effectiveness and affordability of medicine through the prospects of personalized or precision medicine, but have also led to the selection of embryos based on their genetic makeup through preimplantation genetic diagnosis (PGD) and prenatal genetic testing or screening (PGT). Such advances have led to the altering of genes through gene therapies and other genetic interventions for the treatment of disease, but also raise concerns about potential future use of such interventions that move beyond mere therapeutic goals toward human enhancement ends. Genetic medicine is changing how we view behavior and personal responsibility, the gift of children, and the identity and nature of human beings. Developments in genetics and genomics offer exciting new modalities for medicine, they also raise a host of ethical, legal, and social considerations that include among others adverse diagnosis and genetic counseling, the rise of reprogenetics, do-it-yourself (DIY) genetic testing, gene patenting, biobanking, the prospects of big data and their application for personalized or precision medicine, as well as concerns regarding privacy and data security and the potential for genetic discrimination. Furthermore, evolving technological innovations in genetic interventions such as the development of CRISPR continue to demonstrate the importance of moral considerations and societal discourse regarding the proper limits of these technologies, particularly within the realm of human germline interventions.

SUGGESTED RESOURCES:

  • Michael Sleasman, “Bioethics Past, Present, and Future: Important Signposts in Human Dignity” (An overview of bioethics and the breadth of issues it encompasses).
  • Paige Cunningham and Michael Sleasman, “Editing Human Beings” (An introduction to CRISPR and the Ethics of Gene Editing). For more resources geared to everyday life, click here.
  • Video resources from our Academy of Fellow Consultations on “The Ethics & Theology of Synthetic Gametes” and “Genetics, CRISPR, and Beyond?”
  • Heather Zeiger, “Embryoids: Unique Entities or Protected Like Human Embryos?”
  • Michelle Kirtley, “CRISPR Update: Considerations for a Rapidly Evolving and Transformative Technology.”

Bibliography

Genetics (General)

  • Andrews, Lori, Maxwell Mehlman, and Mark Rothstein. Genetics: Ethics, Law and Policy. 4th ed. Eagan, MN: West Academic, 215.
  • Atkinson, Paul, Peter Glasner, and Helen Greenslade, eds. New Genetics, New Identities. New York: Routledge, 2007.
  • Barash, Carol Isaacson. Just Genes: The Ethics of Genetic Technologies. Westport, CT: Praeger, 2007.
  • Berliner, Janice. Ethical Dilemmas in Genetics and Genetic Counseling: Principles through Case Scenarios. Oxford University Press, 2014.
  • Blackford, Russell. Humanity Enhanced: Genetic Choice and the Challenge for Liberal Democracies. Basic Bioethics. Cambridge, MA: MIT Press, 2014.
  • Boesky, Amy, ed. The Story Within: Personal Essays on Genetics and Identity. Baltimore: The Johns Hopkins University Press, 2013.
  • Bunton, Robin and Alan Petersen, eds. Genetic Governance: Health, Risk and Ethics in a Biotech Era. New York: Routledge, 2005.
  • Burley, Justine, ed. The Genetic Revolution and Human Rights. New York: Oxford University Press, 1999.
  • Burley, Justine, and John Harris, eds. A Companion to Genethics. Malden, MA: Blackwell, 2002.
  • Condit, Celeste Michelle. The Meanings of the Gene: Public Debates about Human Heredity. Madison: University of Wisconsin Press, 1999.
  • Corrigan, Oonagh. Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. New York: Routledge, 2004.
  • Deane-Drummond, Celia. Genetics and Christian Ethics. New York: Cambridge University Press, 2006.
  • Deane-Drummond, Celia, Robin Grove-White, and Bronislaw Szerszynski. Reordering Nature: Theology, Society and the New Genetics. New York: T&T Clark, 2003.
  • DeGrazia, David. Creation Ethics: Reproduction, Genetics, and Quality of Life. Reprint ed. Oxford University Press, 2014.
  • Duster, Troy. Backdoor to Eugenics. 2nd ed. New York: Routledge, 2003.
  • Gehring, Verna V., ed. Genetic Prospects: Essays on Biotechnology, Ethics, and Public Policy. Lanham, MD: Rowman & Littlefield, 2004.
  • Hashiloni-Dolev, Yael. A Life (Un)worthy of Living: Reproductive Genetics in Israel and Germany. Dordrecht, Netherlands: Springer, 2007.
  • Häyry, Matti. Rationality and the Genetic Challenge: Making People Better? New York: Cambridge University Press, 2010.
  • Hubbard, Ruth, and Elijah Wald. Exploding the Gene Myth. Boston: Beacon, 1999.
  • Jasanoff, Sheila, ed. Reframing Rights: Bioconstitutionalism in the Genetic Age. Basic Bioethics. Cambridge, MA: MIT Press, 2011.
  • Jersild, Paul. The Nature of Our Humanity: The Ethics of Genetics and Biotechnology. Minneapolis: Fortress Press, 2009.
  • Kevles, Daniel. In the Name of Eugenics: Genetics and the Uses of Human Heredity. New York: Harvard University Press, 1995.
  • Kilner, John F., Rebecca D. Pentz, and Frank E. Young, eds. Genetic Ethics: Do the Ends Justify the Genes? Grand Rapids: Eerdmans, 1997.***
  • Kitcher, Philip. The Lives to Come: The Genetic Revolution and Human Possibilities. New York: Touchstone, 1996.
  • Langlois, Adèle. Negotiating Bioethics: The Governance of UNESCO’s Bioethics Program. New York: Routledge, 2013.
  • Lee, Kee kok. Philosophy and Revolutions in Genetics: Deep Science and Deep Technology. New York: Palgrave Macmillan, 2003.
  • Nelkin, Dorothy, and M. Susan Lindee. The DNA Mystique: The Gene as a Cultural Icon. Ann Arbor, MI: University of Michigan Press, 2004.
  • Paul, Diane B., and Jeffrey P. Brosco. The PKU Paradox: A Short History of a Genetic Disease. Johns Hopkins Biographies of Disease. Baltimore: Johns Hopkins University Press, 2013.
  • Peterson, James C. Genetic Turning Points: The Ethics of Human Genetic Intervention. Grand Rapids: Eerdmans, 2001.
  • Shannon, Thomas A., ed. Genetics: Science, Ethics, and Public Policy: Readings in Bioethics. Lanham, MD: Rowman & Littlefield, 2005.
  • Stern, Alexandra. Telling Genes: The Story of Genetic Counseling in America. Baltimore: Johns Hopkins University Press, 2012.
  • Wertz, Dorothy C., and John C. Fletcher. Genetics and Ethics in Global Perspective. Dordrecht, Netherlands: Springer, 2004.
  • Yashon, Ronnee and Michael Cummings. Human Genetics and Society. 2nd ed. Pacific Grove, CA: Brooks Cole, 2011.

Out of Print

  • Andrews, Lori B. Future Perfect. New York: Columbia University Press, 2001.
  • Cahill, Lisa Sowle. Genetics, Theology, and Society: An Interdisciplinary Conversation. New York: Crossroad, 2005.***
  • Donovan, Aine and Ronald M. Green, eds. The Human Genome Project in College Curriculum: Ethical Issues and Practical Strategies. Lebanon, NH: Dartmouth College Press, 2008.
  • Harris, John. Clones, Genes, and Immortality: Ethics and the Genetic Revolution. New York: Oxford University Press, 1998.
  • Monsen, Rita Black. Genetics and Ethics in Health Care: New Questions in the Age of Genomics Health. Silver Spring, MD: American Nurses Association, 2008.
  • Monsour, Daniel, ed. Ethics and the New Genetics: An Integrated Approach. Toronto: University of Toronto Press, 2007.
  • Murphy, Timothy, and Marc A. Lappe, eds. Justice and the Human Genome Project. Berkeley: University of California Press, 1994.
  • Nelson, J. Robert. On the New Frontiers of Genetics and Religion. Grand Rapids: Eerdmans, 1994.
  • Parker, L.S., and Rachel A. Ankeny, eds. Mutating Concepts, Evolving Disciplines: Genetics, Medicine, and Society. Norwell, MA: Springer, 2002. (e-book edition available)
  • Peters, Ted. Genetics: Issues of Social Justice. Cleveland: Pilgrim, 1998.
  • Peters, Ted. Playing God: Genetic Determinism and Human Freedom. New York: Routledge, 1997.
  • Rothman, Barbara Katz. Genetic Maps and Human Imaginations: The Limits of Science in Understanding Who We Are. New York: W.W. Norton, 1998.
  • Song, Robert. Human Genetics: Fabricating the Future. Cleveland: Pilgrim, 2002.***

Genetic Determinism

  • Buchanan, Allen, Dan W. Brock, Norman Daniels, and Daniel Wikler. From Chance to Choice: Genetics and Justice. New York: Cambridge University Press, 2000.
  • Clark, William R. and Michael Grunstein. Are We Hardwired? The Role of Genes in Human Behavior. New York, Oxford University Press, 2000.
  • Keller, Evelyn Fox. The Century of the Gene. Cambridge, MA: Harvard University Press, 2001.
  • Maheu, Louis and Roderick A. MacDonald, eds. Challenging Genetic Determinism: New Perspectives on the Gene in Its Multiple Environments. Canada: McGill-Queen's University Press, 2011.
  • Parens, Erik, Audrey R. Chapman, and Nancy Press, eds. Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation. Baltimore: Johns Hopkins University Press, 2008.

Out of Print

  • Peters, Ted. Playing God? Genetic Determinism and Human Freedom. New York: Routledge, 2003.

Genetics Law & Public Policy

For relevant materials see the Public Policy Bibliography, particularly the "Genetics & Public Policy" Section.

Intellectual Property & Patenting of Human Genes/Tissues

  • Koepsell, David. Who Owns You? The Corporate Gold Rush to Patent Your Genes. Malden, MA: Blackwell, 2009.
  • Mills, Oliver. Biotechnological Inventions: Moral Restraints and Patent Law. Burlington, VA: Ashgate, 2005.
  • Resnik, David B. Owning the Genome: A Moral Analysis of DNA Patenting. Albany, NY: State University of New York Press, Albany, 2004.
  • Rimmer, Matthew and Alison McLennan, eds. Intellectual Property and Emerging Technologies. Northampton, MA: Edward Elgar Publishing, Inc., 2012.
  • Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Broadway Paperbacks, 2010.
  • Van Overwalle, Geertrui. Gene Patents and Collaborative Licensing Models: Patent Pools, Clearinghouses, Open Source Models and Liability Regimes. New York: Cambridge University Press, 2009.

Out of Print

  • Magnus, David, Arthur L. Caplan, and Glenn McGee, eds. Who Owns Life? Amherst, NY: Prometheus Books, 2002.

Genetic Engineering & Gene Therapy

See related materials in the Biotechnology, Emerging Technology, and Human Enhancement Bibliographies.

  • Baillie, Harold W. and Timothy K. Casey. Is Human Nature Obsolete? Genetics, Bioengineering, and the Future of the Human Condition. Basic bioethics. Cambridge, MA: MIT Press, 2005.
  • Berry, Roberta. The Ethics of Genetic Engineering. Routledge Annals of Bioethics. New York: Routledge, 2008.
  • Cole-Turner, Ronald, ed. Design and Destiny: Jewish and Christian Perspectives on Human Germline Modification. Basic Bioethics. Cambridge, MA: MIT Press, 2008.
  • Edmonds, Matt. A Theological Diagnosis: A New Direction on Genetic Therapy, ‘Disability’ and the Ethics of Healing. Philadelphia: Jessica Kingsley Publishers, 2011.
  • Evans, John H. Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate. Chicago: The University of Chicago Press, 2002.
  • Flaman, Paul. Genetic Engineering: Christian Values and Catholic Teaching. Mahwah, NJ: Paulist Press, 2002. ***
  • Green, Ronald M. Babies by Design: The Ethics of Genetic Choice. New Haven, CT: Yale University Press, 2007.
  • LeVine III, Harry. Genetic Engineering. 2nd ed. Santa Barbara: ABC-CLIO Inc., 2006.
  • Mehlman, Maxwell J. Transhumanist Dreams and Dystopian Nightmares: The Promise and Peril of Genetic Engineering. Baltimore: The Johns Hopkins University Press, 2012.
  • Miah, Andy. Genetically Modified Athletes: Biomedical Ethics, Gene Doping and Sport. London: Routledge, 2004.
  • Nossal, G. J. V. and Ross L. Coppel. Reshaping Life: Key Issues in Genetic Engineering. New York: Cambridge University Press, 2002.
  • Rasko, John, Gabrielle O'Sullivan, and Rachel Ankeny, eds. The Ethics of Inheritable Genetic Modification: A Dividing Line? New York: Cambridge University Press, 2006.
  • Reiss, Michael J. and Roger Straughan. Improving Nature? The Science and Ethics of Genetic Engineering. United Kingdom: Cambridge University Press, 2001.
  • Sandel, Michael J. The Case against Perfection: Ethics in the Age of Genetic Engineering. Cambridge, MA: Belknap, 2007.
  • Schneider, Angela J., and Theodore Friedmann, eds. Gene Doping in Sports: The Science and Ethics of Genetically Modified Athletes. San Diego: Academic, 2006.
  • Stock, Gregory. Redesigning Humans: Our Inevitable Genetic Future. New York: Houghton Mifflin, 2002.

Out of Print

  • Boylan, Michael, and Kevin Brown. Genetic Engineering: Science and Ethics on the New Frontier. Upper Saddle River, NJ: Prentice Hall, 2001.
  • Coors, Marilyn E. The Matrix: Charting an Ethics of Inheritable Genetic Alteration. Lanham, MD: Rowman & Littlefield, 2002.
  • Dann, Jack, and Gardner R. Dozois, eds. Clones: Nine Tales of Genetic Engineering and Its Impact on Tomorrow. New York: Ace, 1997. (e-book edition available)
  • Demy, Timothy J. and Gary P. Stewart, eds. Genetic Engineering: A Christian Repsonse: Crucial Considerations for Shaping Life. Grand Rapids: Kregel, 1999. ***
  • Gordon, Jon W. The Science and Ethics of Engineering the Human Germ Line: Mendel's Maze. Hoboken, NJ: Wiley-Liss, Inc., 2003.
  • Palmer, Julie Gage, and LeRoy Walters. The Ethics of Human Gene Therapy. New York: Oxford University Press, 1997.
  • Shannon, Thomas A. Made in Whose Image: Genetic Engineering and Christian Ethics. New York: Humanity Books, 1999.***
  • Stock, Gregory, and John Campbell, eds. Engineering the Human Germline: An Exploration of the Science and Ethics of Altering the Genes We Pass to Our Children. New York: Oxford University Press, 2000.

Genetic Testing & Screening

See related materials in the Disability Ethics and Reproductive Ethics Bibliographies.

  • Baily, Mary Ann and Thomas H. Murray, eds.  Ethics and Newborn Genetic Screening: New Technologies, New Challenges. Baltimore: John Hopkins University Press, 2009.
  • Chadwick, Ruth F., Darren Shickle, H.A. Ten Have, and Urban Wiesing, eds. The Ethics of Genetic Screening. The Netherlands: Kluwer Academic, 2010.
  • Klizman, Robert. Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing. New York: Oxford University Press, 2012.
  • Raz, Aviad E. Community Genetics and Genetic Alliances: Eugenics, Carrier Testing, and Networks of Risk. New York: Routledge, 2010.
  • Sharpe, Neil F., and Ronald F. Carter. Genetic Testing: Care, Consent and Liability. Hoboken, NJ: John Wiley & Sons, 2006.
  • Skene, Loane and Janna Thompson, eds. The Sorting Society: The Ethics of Genetic Screening and Therapy. New York: Cambridge University Press, 2008.
  • Valverde, Carlos. Genetic Screening of Newborns: An Ethical Inquiry. New York: Nova Science Publishers, 2010.

Out of Print

  • Willer, Roger A., ed. Genetic Testing and Screening: Critical Engagement at the Intersection of Faith and Science. Minneapolis: Kirk House, 1998.

Reproductive Genetics (Reprogenetics)

See related materials in the Disability Ethics, Human Enhancement, and Reproductive Ethics Bibliographies.

  • Chadwick, Ruth, ed. Ethics, Reproduction and Genetic Control. 2nd ed. New York: Routledge, 1994.
  • Davis, Dena S. Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children's Futures. 2nd ed. New York: Oxford University Press, 2009.
  • Glover, Jonathan.  Choosing Children: Genes, Disability, and Design. New York: Oxford University Press, 2006.
  • Knowles, Lori P. and Gregory K. Kaebnick, eds.  Reprogenetics: Law, Policy and Ethical Issues.  Baltimore: John Hopkins University Press, 2007.
  • Gavaghan, Colin. Defending the Genetic Supermarket: Law and Ethics of Selecting the Next Generation. New York: Routledge-Cavendish, 2007.
  • Roberts, Melina A. and David T. Wasserman, eds. Harming Future Persons: Ethics, Genetics and the Nonidentity Problem. New York: Springer, 2009.
  • Wilkinson, Stephen. Choosing Tomorrow’s Children: The Ethics of Selective Reproduction. New York: Oxford University Press, 2010.

Out of Print

  • Gordon, Jon W. The Science and Ethics of Engineering the Human Germ Line: Mendel's Maze. Hoboken, NJ: Wiley-Liss, 2003.
  • Haker, Hille and Deryck Veyleveld, eds. The Ethics of Genetics in Human Procreation. Burlington, VA: Ashgate, 2000.
  • McGee G. The Perfect Baby: Parenthood in the New World of Cloning and Genetics. Lanham, MD: Rowman & Littlefield, 2000.
  • Stock, Gregory, and John Campbell, eds. Engineering the Human Germline: An Exploration of the Science and Ethics of Altering the Genes We Pass to Our Children. New York: Oxford University Press, 2000.

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