Article contents
From Eugenics to Medical Genetics
Published online by Cambridge University Press: 14 October 2011
Extract
Sheldon Reed coined the expression “genetic counseling” in 1947, the same year he succeeded Clarence P. Oliver as Director of the University of Minnesota's Dight Institute for Human Genetics. In reflections written more than a quarter-century later, Reed noted that the term had occurred to him “as a kind of genetic social work without eugenic connotations.” Sharply distinguishing the aims of eugenics and counseling, he explained that whereas the former promotes the interests of the larger society, the latter serves the interests of individual families—as families perceive them. Reed never denied that he or other postwar medical geneticists were concerned with population improvement. But he maintained that counseling served a different purpose. Commenting on the history of the Dight Institute, Reed asserted: “There were certainly no attempts to benefit society as a whole in dealing with these families. This was not thought of as a program of eugenics.”
- Type
- Articles
- Information
- Journal of Policy History , Volume 9 , Special Issue 1: Health Care Policy in Contemporary America , January 1997 , pp. 96 - 116
- Copyright
- Copyright © The Pennsylvania State University, University Park, PA. 1997
References
Notes
1. Reed, Sheldon, “A Short History of Genetic Counseling,” Dight Institute Bulletin, no. 14 (1974), 4–5.Google Scholar
2. “Proposal,” Rockefeller Archive Center, North Tarrytown, N.Y.; Record Group 1.1, Series 200, Box 154, Folder 1393. 1 am grateful for the Division of Research Programs of the National Endowment for the Humanities for its research support. Special thanks are due Sheldon Reed for allowing me access to his papers and to Peter Coventry, Sharon Durfy, and Robert Resta for insightful comments on earlier drafts of this essay.
3. Reed, Sheldon, “Heredity Counseling and Research,” Eugenical News 37 (1952): 43.Google Scholar
4. Reed, Sheldon, Counseling in Medical Genetics (Philadelphia, 1955), 14.Google Scholar
5. Ibid., 4–15.
6. Johnson, Susan, “Eugenics in the Aftermath of WWII: A Study of Articles in Science, Nature, and the Scientific Monthly.” paper, History of Eugenics seminar, University of Massachusetts/Boston, 1995.Google Scholar
7. Oliver, Clarence P., “A Report on the Organization and Aims of the Dight Institute,” Dight Institute Bulletin, no. 1 (1943), 2.Google Scholar
8. Elmer Roberts, “Biology and Social Problems,” Dight Institute Bulletin, no. 4, 18.
9. Phelps, , “The Eugenics Crusade of Charles Fremont Dight,” Minnesota History 49 (1984): 99–108Google ScholarPubMed: Sheldon Reed, “A Short History,” 1–3; Swanson, E., “Biographical Sketch of Charles Fremont Dight,” Dight Institute Bulletin, no. 1 (1943), 9–22.Google Scholar
10. For standard accounts of the founding of Bowman-Gray, see Porter, Ian, “Evolution of Genetic Counseling in America,” in Lubs, H. A. and de la Cruz, F., eds., Genetic Counseling (New York, 1977), 26Google Scholar, and Meads, Marston, The Miracle at Hawthorne (Winston-Salem: Medical Center of Bowman-Gray School of Medicine and North Carolina Baptist Hospital, 1988), 51Google Scholar, where Draper is characterized as “a New York philanthropist with a deep interest in population genetics.” Draper wished to fund individuals and institutions with the proper attitudes toward “(a) miscegenation, (b) immigration quotas, (c) improving population quality by (1) positive, (2) negative measures.” Ruggles Gates to Sheldon Reed, August 13, 1954.
11. On the Pioneer Fund, see Mehler, Barry, “The New Eugenics: Academic Racism in the U.S. Today,” Science for the People 15 (May/June 1983): 18–23Google Scholar, and essays by Adam Miller, “Professors of Hate,” and J. Sedgwick, “Inside the Pioneer Fund,” in Jacoby, R. and Glauberman, N., eds., The Bell Curve Debate: History, Documents, Opinions (New York, 1994), 162–78Google Scholar, 144–61. On the Rockefeller Foundation, see Paul, Diane B., “The Rockefeller Foundation and the Origins of Behavior Genetics,” in Benson, K. et al., eds., The Expansion of American Biology (New Brunswick, N.J., 1991), 262–83.Google Scholar
12. Montagu, Ashley, Human Heredity (New York, 1959), 305–6.Google Scholar
13. Pauling, Linus, “Reflections on the New Biology,” UCLA Law Review 15 (1968): 267–72.Google Scholar
14. Glass, Bentley, “Science: Endless Horizons or Golden Age?” Science 17 (1971): 28.Google Scholar
15. Muller, H. J., “Our Load of Mutations,” American Journal of Human Genetics 2 (1950): 111–76Google ScholarPubMed; see also Paul, Diane B., “‘Our Load of Mutations’ Revisited,” Journal of the History of Biology 20 (1987): 321–35.CrossRefGoogle Scholar
16. Dice, Lee R., “The Structure of Heredity Counseling Services,” Eugenics Quarterly 5 (1958): 40.CrossRefGoogle Scholar
17. Dice, Lee R., “Concluding Remarks,” in “A Panel Discussion: Genetic Counseling,” American Journal of Human Genetics 4 (1952): 346.Google Scholar
18. Childs, Barton, “Genetic Counseling: A Critical Review of the Published Literature,” in Cohen, B., ed., Genetic Issues in Public Health and Medicine (Springfield, Ill., 1978), 347Google Scholar. This is also the view of Sorenson, James R., “Genetic Counseling: Values That Have Mattered,” in Bartels, D. M. et al. , eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (New York, 1993), 3–14.Google Scholar
19. Oliver, Clarence P., “Human Genetics Program at the University of Texas,” Eugenical News 37 (1952): 25–31.Google Scholar
20. Oliver, Clarence P., “Statement,” in “A Panel Discussion: Genetic Counseling,” American Journal of Human Genetics 4 (1953): 343.Google Scholar
21. Herndon, Nash, “Human Resources from the Viewpoint of Medical Genetics,” Eugenical News 35 (1950): 8.Google Scholar
22. Kallmann, Franz, “Types of Advice Given by Heredity Counselors,” Eugenics Quarterly 5 (1958): 48–50.CrossRefGoogle Scholar
23. Stem, Curt, Principles of Human Genetics (San Francisco, 1949), 603.Google Scholar
24. I say “broadly defined” because genetics has been largely irrelevant both to the diagnosis and treatment of metabolic disorders. Thus PKU is a genetic disease, but it is identified through a blood test and treated through diet and social support.
25. Penrose, Lionel S., “Phenylketonuria: A Problem in Eugenics,” The Lancet (June 29, 1946): 949–51Google Scholar. For a discussion of Penrose's contributions to human genetics, see Kevles, Daniel J., In the Name of Genetics: Genetics and the Uses of Human Heredity (New York, 1985), 148–63Google Scholar, 176–78, 213–15, 220–22.
26. Paul, Diane B. and Edelson, Paul J., “The Struggle over Screening,” in de Chadarevian, D. and Kamminga, H., eds., Molecularising Biology and Medicine: New Practices and Alliances, 1930s–1970s (Reading, England, forthcoming).Google Scholar
27. Masland, Richard L., “The Prevention of Mental Subnormality,” in Masland, R. L. et al. , Mental Subnormality: Biological, Psychological, and Cultural Factors (New York, 1958), 15.Google Scholar
28. On developments in human cytogenetics, see Kevles, In the Name of Eugenics, 238–68.
29. Snyder, Lawrence, “Heredity and Modern Life,” in Gates, R. G. et al. eds., Medical Genetics and Eugenics, vol. 2 (Philadelphia, 1943), 24.Google Scholar
30. Allan, William et al. , “Some Examples of the Inheritance of Mental Deficiency: Apparently Sex-Linked Idiocy and Micro-encephaly,” American Journal of Mental Deficiency 48 (1944): 28.Google Scholar
31. For example, see Allen, Gordon, “Perspectives in Population Genetics,” Eugenics Quarterly 2 (1955): 91CrossRefGoogle Scholar; Neel, James V. and Schull, William, Human Heredity (Chicago, 1954), 256Google Scholar; Kemp, Tage, “Genetic Hygiene and Genetic Counseling,” Acta Genetica et Statistica Medica 4 (1953): 297Google ScholarPubMed, and Murphy, Gardner, “A Research Program for Qualitative Eugenics,” Eugenics Quarterly 1 (1954): 209–12.CrossRefGoogle Scholar
32. For example, see Cavalli-Sforza, L. L. and Bodmer, W. F., The Genetics of Human Populations (San Francisco, 1971), 757–58.Google Scholar
33. Frederick Osborn, Transcript, Oral History Interview (July 10, 1974), Columbia University, New York, 7.
34. Osborn, Frederick, The Future of Human Heredity (New York, 1968), 25.Google Scholar
35. MacBride, E. W., “British Eugenists and Birth Control,” Birth Control Review 6 (1922): 247.Google Scholar
36. Lenz, Fritz, “Die Erblichkeit der Geistigen Eigenschaften,” in Baur, E. et al. , Menschliche Erblichkeitslehre und Rassenhygiene, Band I: Menschliche Erblehre (Munich, 1936), 661.Google Scholar
37. Proctor, Robert, Racial Hygiene: Medicine Under the Nazis (Cambridge, Mass., 1988), 107–8.Google Scholar
38. Osborn, Frederick, “Editorial,” Eugenics Quarterly 1 (1954): 2.Google Scholar
39. Osborn, Frederick, Preface to Eugenics, 2d ed. (New York, 1951), 82.Google Scholar
40. Muller, “Our Load of Mutations,” 165; Neel, James V., “On Emphases in Human Genetics,” Genetics 78 (1974): 39.Google ScholarPubMed
41. Herndon, C. Nash, “Heredity Counseling,” Eugenics Quarterly 1 (1954): 66.CrossRefGoogle Scholar
42. Herndon, C. Nash, “Statement,” in “A Panel Discussion: Genetic Counseling,” American Journal of Human Genetics 4 (1952): 335.Google Scholar
43. Dice, Lee R., “Heredity Clinics: Their Value for Public Service and Research,” American Journal of Human Genetics 4 (1952): 6.Google Scholar
44. Macklin, Madge T., “The Value of Medical Genetics to the Clinician,” in Davenport, C. B. et al. , Medical Genetics and Eugenics (Philadelphia, 1940), 138.Google Scholar
45. Reed, Counseling in Medical Genetics, 339.
46. Reed, Sheldon, “Heredity Counseling,” Eugenics Quarterly 1 (1954): 48–49.CrossRefGoogle Scholar
47. Falls, Harold, “Consideration of the Whole Person,” in Hammons, H., ed., Heredity Counseling (New York, 1959), 99Google Scholar; see also V. Cowie, “Genetic Counseling and the Changing Impact of Medical Genetics,” and Barnes, A., “Prevention of Congenital Anomalies from the Point of View of the Obstetrician,” in Second International Conference on Congential Malformations (New York, 1964), 375, 378–79.Google Scholar
48. Dice, Lee R., “Heredity Clinics: Their Value for Public Service and Research,” American Journal of Human Genetics 4 (1952): 2.Google Scholar
49. Neel, James V., “Lessons from a Primitive People,” Science 170: 820–21Google Scholar; see also his Physician to the Gene Pool (New York, 1994), 361.Google Scholar
50. Carter, C. O., “Prospects in Genetic Counseling,” in Emery, A., ed., Modern Trends in Human Genetics I (New York, 1970), 340–41.Google Scholar
51. Reed, Sheldon, “Heredity Counseling and Research,” Eugenical News 37 (1952): 43.Google Scholar
52. Reed, Sheldon, Parenthood and Heredity (New York, 1964), 85.Google Scholar
53. Sorenson, J. R. and Culbert, A. J., “Genetic Counselors and Counseling Orientation—Unexamined Topics in Evaluation,” in Lubs, H. A. and de la Cruz, F., eds., Genetic Counseling (New York, 1974).Google Scholar
54. Fraser, F. Clarke, “Genetic Counseling,” in McKusick, V. and Claiborne, R., eds., Medical Genetics (New York, 1973), 225.Google Scholar
55. Melissa Richter, who first suggested the program, was a physiologist and Dean for the Center of Continuing Education at Sarah Lawrence; Joan Marks, the program's director, was trained as a psychiatric social worker, and Virginia Apgar, developer of the Apgar system for scoring newborns, was a teratologist. I am grateful to Robert Resta for pointing out the disjunction between the program's founders and the major players in human genetics.
56. Wertz, Dorothy and Fletcher, John, “Ethical Decision Making in Medical Genetics: Women as Patients and Practitioners in Eighteen Nations,” in Ratcliff, K. et al. , Healing Technology: Feminist Perspectives (Ann Arbor, 1989), 221–41.Google Scholar
57. Leonard, C. O. et al. , “Genetic Counseling: A Consumers' View,” New England Journal of Medicine 287 (1972): 437.CrossRefGoogle ScholarPubMed
58. See Twiss, Seymour, “The Genetic Counselor as Moral Advisor,” Birth Defects, Original Articles Series 15 (1979), 201.Google ScholarPubMed
59. U.S. Congress, Office of Technology Assessment, Cystic Fibrosis and DNA Tests: Implications of Carrier Screening, OTA-BA-532 (Washington, D.C., August 1992), 213.Google Scholar
60. Bartels, D. et al. , eds., “Code of Ethics: National Society of Genetic Counselors,” in Prescribing Our Future: Ethical Challenges in Genetic Counseling (New York, 1993), 170.Google Scholar
61. Andrews, Lori B. et al. eds., Assessing Genetic Risks: Implications for Health and Social Policy (Washington, D.C., 1994), 14–15. Italics in original.Google Scholar
62. Theodore Cooper, “Implications of the Amniocentesis Registry Findings,” unpublished report (October 1975), 2.
63. Clayton, Ellen Wright, “Reproductive Genetic Testing: Regulatory and Liability Issues,” in Thomson, E. et al. , eds. Reproductive Genetic Testing: Impact upon Women. Supplement to Fetal Diagnosis and Therapy 8 (Basel, 1993), 54–55Google Scholar; and Health Children 2000. DHHS Publication No. HRSA-M. CH 91–92. U.S. Department of Health and Human Services, Public Health Service, Health Resources and Services Administration, Maternal and Child Health Bureau (Washington, D.C., 1991), 153.Google Scholar
64. Caplan, Arthur, “Neutrality Is Not Morality: The Ethics of Genetic Counseling,” in Bartels, D. et al. , eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (New York, 1993), 159.Google Scholar
65. Mooney, Gavin and Lange, Mette, Social Science and Medicine 37 (1993): 873.CrossRefGoogle Scholar
66. Faden, Ruth et al. , “Prenatal Screening and Pregnant Women's Attitude Toward the Abortion of Defective Fetuses,” American Journal of Public Health 77 (1987): 3.CrossRefGoogle ScholarPubMed
67. Chadwick, Ruth, “What Counts as Success in Genetic Counselling?” Journal of Medical Ethics 19 (1993): 43–46.CrossRefGoogle ScholarPubMed
68. Rapp, Rayna, “Chromosomes and Communication: The Discourse of Genetic Counseling,” Medical Anthropology Quarterly 2 (1988): 152.CrossRefGoogle Scholar
69. Singer, Eleanor, “Public Attitudes Toward Genetic Testing,” Population Research and Policy Review 10 (1991): 235–55.CrossRefGoogle ScholarPubMed
70. Botkin, J. and Alemagno, S., “Carrier Screening for Cystic Fibrosis: A Pilot Study of the Attitudes of Pregnant Women,” American Journal of Public Health 82 (1992): 723–25.CrossRefGoogle ScholarPubMed
71. Wertz, Dorothy et al. , “Attitudes Toward Abortion Among Parents of Children with Cystic Fibrosis,” American Journal of Public Health 81 (1991): 992–96.CrossRefGoogle ScholarPubMed
72. Faden et al., “Prenatal Screening,” 3.
73. Sujansky, Eva et al. , “Attitudes of At-Risk and Affected Individuals Regarding Presymptomatic Testing for Autosomal Dominant Polycystic Kidney Disease,” American Journal of Medical Genetics 35 (1990): 510–15.CrossRefGoogle ScholarPubMed
74. For example, see Manicol, A. M. et al. , “Implications of a Genetic Screening Programme for Polycystic Kidney Disease,” Aspects of Renal Care 1 (1986): 219–22Google Scholar; Watson, et al. , “Adult Polycystic Kidney Disease,” British Medical Journal 300 (1990): 62–63CrossRefGoogle ScholarPubMed, Adam, S. et al. , “Five Year Study of Prenatal Testing for Huntington's Disease: Demand, Attitudes, and Psychological Assessment,” Journal of Medical Genetics 30 (1993): 549–56CrossRefGoogle ScholarPubMed; Eggers, Sabine et al. , “Facioscapulohumeral Muscular Dystrophy: Aspects of Genetic Counseling, Acceptance of Preclinical Diagnosis, and Fitness,” Journal of Medical Genetics 30 (1993): 589–92CrossRefGoogle ScholarPubMed; Mooney and Lange, “Ante-Natal Screening,” 875.
75. Wertz, “Attitudes Toward Abortion,” 992–96.
76. U.S. Congress, Cystic Fibrosis and DNA Tests, 18.
77. Ibid., 151–52. There are currently only about one thousand Master's-level counselors in the United States.
78. See Press, Nancy A. and Browner, Carol H., “Collective Silences, Collective Fictions: How Prenatal Testing Became Part of Routine Prenatal Care,” in Rothenberg, K. H. and Thomson, E. J., Women and Prenatal Testing: Facing the Challenge of Genetic Technology (Columbus, Ohio, 1994), 201–18.Google Scholar
79. Bekker, Hilary et al. , “Uptake of Cystic Fibrosis Testing in Primary Care: Supply Push or Demand Pull?” British Medical Journal 306 (June 1993): 1584–86CrossRefGoogle ScholarPubMed. See also Clayton, Ellen Wright et al. , “Lack of Interest by Nonpregnant Couples in Population-Based Cystic Fibrosis Carrier Screening,” American Journal of Human Genetics 58 (1996): 617–27.Google ScholarPubMed
- 13
- Cited by