Education - Higher Education

Engineering the Genes: Ethical Dilemmas in Modern Biotechnology

Part 3: Biotechnology as a new eugenics: genetic testing and reproductive technologies

Introduction

The dream of choosing the traits of our offspring—in effect, being able to design the next generation—is as old as human history. With the rise of reproductive technologies, especially those involving genetic testing and manipulation, the dream at last seemed to be practicable. In the early 1960s, the biologist John Gurdon successfully cloned a frog, raising the possibilities of cloning mammals (achieved with Dolly the sheep in 1996) and eventually human beings. In 1962, the Nobelist Hermann J. Muller suggested that a bank containing the sperm of eminent men might be an attractive option for modern, liberated women seeking to have high-quality children. In 1969, Robert Sinsheimer, a founder of the Human Genome Project, floated the idea of doing gene therapy (that is, altering the genes) not only on somatic (body) cells, but on the germ line as well—the eggs and sperm. In 1978, the birth of “test tube baby” Louise Brown marked the first successful use of in-vitro fertilization. Once access to egg and sperm were achieved in this way, their manipulation and alteration were, in principle, made possible.

The growth of genetic counseling services in the 1970s and the legalization of abortion in the United States in 1973 meant that a woman could choose not only whether to carry a fetus to term, but whether to do so based on her fetus’ possession of certain traits. Fertility clinics now offer screening and choice at all levels. Carrier screening involves taking family histories and doing genetic tests on would-be parents. Prenatal fetal testing includes amniocentesis (routine for pregnant women over 35) as well as a new type of non-invasive prenatal testing (NIPT). Genetic diagnosis of embryos prior to implantation brings screening to an even earlier stage than the fetal. Sperm banks and egg donor registries take the concept of choice to the most fundamental level. Sperm and egg donors are routinely chosen on the basis of their looks, grades, and musical or sports abilities. Practices such as these make possible not simply the avoidance of genetic disease in our offspring, but they also offer a means of enhancing their traits: producing children who are “better than well.”

The specter of eugenics haunts nearly all discussion of reproductive technologies. “Eugenics” means literally “well born,” and its coiner, the 19th century statistician Francis Galton, envisioned it as the science of breeding a better race. In the 1910s and 1920s eugenics became popular among American scientists, social reformers, and politicians alike. Laws were passed (with backing and support from eugenics advocates) mandating especially low quotas on “undesirable” immigrants and making compulsory sterilization of institutionalized people deemed “unfit” to reproduce. The Nazi eugenics program was based, in part, on American laws. Even after the early twentieth century American eugenics movement collapsed in the 1930s in the wake of news of Nazi atrocities, some geneticists like Muller and Sinsheimer continued quietly to hope for a new, enlightened, reform eugenics.

Critics of assisted reproductive technologies—who range from religious conservatives to pro-choice feminists—charge that the desire for disease-free, highly endowed children is no different from the ideal that drove the eugenics movement. The old cruelties and crudeness may be gone, but the notion persists that some lives are not worth living, that disability must be at all costs avoided. The proponents of the new technologies respond that present-day fertility services are voluntary, clinics are privately funded and operated, and their practices could never become the state mandated program that eugenics once was. Rather than trying to decide whether reprogenetics is or is not a new eugenics, the readings encourage students to analyze how claims about eugenics function in the debate.

This part of the module then examines genetic testing and screening at the various levels, illustrating each with a case study that showcases the values in clash.

Class 5: The rise and fall of eugenics, 1900-40, and the persistence of eugenic ideals post World War II.

discussion resources

Paul, Diane. “Eugenic Anxieties, Social Realities, and Political Choices.” In The Politics of Heredity: Essays on Eugenics, Biomedicine, and the Nature-Nurture Debate. Albany, NY: State University of New York Press, 1998, pp. 95-116.
Spring Harbor Laboratory. “Virtual Exhibits.” From Image Archive on the American Eugenics Movement. Accessed November 20, 2013. http://www.eugenicsarchive.org/eugenics/list2.pl. The virtual exhibits include brief historical essays on different aspects of the eugenics movement and collections of primary documents and photographs. Read the essays and browse through the primary sources

Discussion questions:

What was eugenics, and how did it change over the course of the first half of the 20th century? Choose one primary source from the Eugenics Archive and analyze it: what does it reveal about the American eugenics movement at the time it was produced?
To whom did eugenics appeal, and why? What accounts for its decline?
In what ways did its ideals persist even after World War II?

Class 6: The ethics of reprogenetic testing: should parents choose their children?

debate resources:

Wailoo, Keith and Stephen Pemberton. “Eradicating a “Jewish Gene”: Promises and Pitfalls in the Fight against Tay-Sachs Disease.” In The Troubled Dream of Genetic Medicine. Baltimore, MD: Johns Hopkins University Press, 2006, pp. 14-16.
Thernstrom, Melanie. “Meet the Twiblings.” New York Times Magazine, Jan 2, 2011.
Matchan, Linda. “Who’s Your Daddy?” Boston Globe, Sep. 15, 2011.
Harmon, Amy. “Couples Cull Embryos to Halt Heritage of Cancer.” The New York Times, September 3, 2006.
“Beware the Destiny Test.” Scientific American (February 2013), 308, p. 12. (doi:10.1038) http://www.nature.com/scientificamerican/journal/v308/n2/full/scientificamerican0213-12.html
Silver, Lee. Remaking Eden: How Genetic Engineering and Cloning Will Transform the American Family. New York: Harper Collins, 1998, Prologue, Part 4, Part 5, and Epilogue.
Sandel, Michael. “The Case Against Perfection.” Atlantic Monthly, April 2004.
Kass, Leon. “The Age of Genetic Technology Arrives.” In Life, Liberty, and the Defense of Dignity: The Challenge for Bioethics. New York: Encounter, 2002.
Hubbard, Ruth, and Stuart Newman. “Yuppie Eugenics: Creating a world with genetic haves and have-nots.” Z Magazine, March 2002. https://zcomm.org/zmag/.

debate questions

Is screening for gender or eye color of potential offspring ethical? Or is it (in Ruth Hubbard’s term) “genomania”?
Is the treatment/enhancement distinction tenable, or impossible? Compare the debate over the use of human growth hormone: is biotechnology supposed to correct disease, or make people better than well?
Consider the disability critique: will disabilities like Down’s syndrome become a rarity if reproductive technologies are used?
Consider the distributive justice critique: is this a technology for the wealthy?
Where should we draw the line? At what point (if any) do these assisted reproductive technologies become unethical, and why? Or, when it comes to reproduction, an intensely private matter, is freedom of choice truly the highest possible value?

This part of the module concludes with an essay assignment. Students could be asked to choose one specific assisted reproductive technology, for example, egg or sperm donation, pre-implantation genetic diagnosis, or non-invasive prenatal testing. They should analyze the ethical issues that that technology raises (what are the values in clash?), explain who the stakeholders are, and defend the position of one of them. Should the technology be regulated in any way, and if so, how? Stakeholders in debates over assisted reproductive technologies could include fertility clinics, disability rights advocates, the Catholic Church, the National Organization for Women, or Planned Parenthood. They could also include advocates like Lee Silver, or critics like Leon Kass, Michael Sandel, or Ruth Hubbard.

Optional reading for philosophical background (can be used along with any of the three parts of the module):

Kant, Immanuel. Groundwork of the Metaphysics of Morals, trans. and ed. Mary Gregor and Jens Timmermann. Cambridge, MA: Cambridge University Press, 1785/2012, pp. 19-47.

Singer, Peter. “About Ethics.” In Writings on an Ethical Life. New York, NY: Ecco Press, 2000, pp. 7-17.

Rawls, John. A Theory of Justice. Cambridge, MA: Harvard University Press, 1971, pp. 3-27.

From DNA to Beer