Ellen Herman

Department of History, University of Oregon


HIST 460/560, Winter 2007
Reading and Discussion Questions, Week 5

Diane Paul, “Eugenic Origins of Medical Genetics”

1. What do you consider the major differences and similarities between eugenics and genetic counseling? How does Paul describe the chronological development and basic concerns of each in the U.S.? How did they overlap?

2. What impact did evolving technologies of prenatal testing for genetic disease and deformity–such as amniocentesis–have? What about the legalization of abortion?

3. Paul argues that eugenicists were more concerned with eliminating mental than physical disabilities? Do you think that the movement toward genetic counseling changed that emphasis or not?

4. When Paul suggests that the presumption of rational reproductive decision-making is questionable, what does she mean? Are the would-be parents who use genetic tests to select for deafness or dwarfism (described in the article by Sanghavi) acting rationally?

5. Do you think that progress in genetic science and technology has made all Americans into eugenicists? Has it increased the power that women have over their fertility? Has it eliminated the need for eugenics? Something else?

6. In your view, is reproduction purely a private matter or does it have social dimensions? If it is purely a private matter, what (if anything) does that suggest about how individuals exercise reproductive freedom in a market society with dramatic socio-economic disparities? If it has social dimensions, what (if anything) does that suggest about the direction of public policy related to fertility and family-making in a democratic society that champions equality?

7. What do you think have been the fundamental principles governing reproductive decision-making in modern U.S. history? What do you think they should be?

8. “Reproductive choice and ‘public health’ models of genetic services do not easily cohere.” (p 150) What does the author mean by this?

Erik Parens and Adrienne Asch, “The Disability Rights Critique of Prenatal Genetic Testing”

1. Why do the advocates of disability rights worry about prenatal genetic testing?

2. The critique of prenatal genetic testing presented by Parens and Asch included two components: 1) testing is morally problematic, and 2) testing is based on misinformation. Explain each.

3. How does this critique try to reconcile the principle of reproductive freedom with the moral dilemmas associated with selective abortion?

4. What is the “expressivist argument” detailed on p. 13?

5. Do you think that the availability of prenatal genetic tests has encouraged people to believe that they can control the “quality” of the children they conceive? Is this good or bad for parents and children? Why?

6. What is the commodification of children and why is that a problem?

7. How do you respond to the claim that disability is largely socially structured, and that challenges for children and adults with disabilities have more to do with the social organization of access and opportunity than with the disabling traits themselves? Do you think that disability can ever be “neutral”? What would it take to convince would-be parents that having a child with a disability is no more difficult, on balance, than having a child without one, or that the child will have a life just as fulfilling and complete as his/her non-disabled peers?

8. What’s the difference between descriptive claims about normal (and abnormal) traits and evaluative claims about persons?

9. Some people utilize prenatal genetic testing to select against disease and disability. Others use prenatal genetic testing to select for desirable traits. Do you feel differently about these? Would you govern them differently? Why?

10. Parens and Asch conclude their article by defining people with disabilities as the most recent group to join the civil rights revolution in the United States. How are questions of prenatal genetic testing like and unlike other civil rights claims?

11. After reading this article, what public policies or professional practices related to prenatal genetic testing would you change?

Mary Ann Baily, “Why I Had Amniocentesis”

1. Baily writes that her decision to have amniocentesis grew out of her belief that “abortion is not morally problematic in itself.” What does she mean?

2. How does Baily relate her own decision about amniocentesis to the “expressivist argument” formulated by Parens and Asch? Why does Baily worry about using the “expressivist argument” to criticize prenatal genetic testing.