Are we entering a "perfect storm" for a resurgence of eugenics? Science, medicine, and their social context

A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era

Volumn , Issue , 2011, Pages 193-218

  McCabe, Linda L ^a   McCabe, Edward R B ^b  

^a UNIVERSITY OF CALIFORNIA   (United States)

^b Henry Samuel School of Engineering and Applied Science   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84857062793     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Chapter

References (95)

1. See generally Daniel Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (New York: Harvard University Press, 1985);
2. Kenneth L. Garver and Bettylee Garver, "Eugenics: Past, Present, and Future", American Journal of Human Genetics 49(1991):1109-18;
3. Allen Buchanan, Dan W. Brock, Norman Daniels, and Daniel Wikler, From Chance to Choice: Genetics and Justice (Cambridge: Cambridge University Press, 2000);
4. Nikolas Rose, The Politics of Life Itself: BioMedicine, Power, and Subjectivity in the Twenty-first Century (Princeton, N. J.: Princeton University Press, 2007).
5. Many of the issues we analyze in this essay were raised in our earlier book: Linda L. McCabe and Edward R. B. McCabe, DNA: Promise and Peril (Berkeley: University of California Press, 2008).
6. Garland E. Allen, "The Social and Economic Origins of Genetic Determinism: A Case History of the American Eugenics Movement, 1900-1940, and Its Lessons for Today", Genetica 99(1997):77-88, at 78-80;
7. Garland E. Allen, "Is a New Eugenics Afoot?" Science 294(2001):59-61.
8. Allen", Social and Economic Origins", 85.
9. Allen, "Is a New Eugenics Afoot?" 61.
10. Dorothy Nelkin, "Molecular Metaphors: The Gene in Popular Discourse", Nature Review Genetics 2(2001):555-59, at 557;
11. Horace F. Judson, "Talking about the Genome: Biologists Must Take Responsibility for the Correct Use of Language in Genetics", Nature 409(2001):769;
12. and Tania Bubela, "Science Communication in Transition: Genomics Hype, Public Engagement, Education, and Commercialization Pressures", Clinical Genetics 70(2006):445-50, at 446.
13. Sandra Sabatini, "Mapping of the Human Genome: What Does It Mean for Our Patients?" American Journal of the Medical Sciences 322(2001):175-78, at 175.
14. Judson, "Talking about the Genome", 769.
15. Charles R. Scriver and Paula J. Waters, "Monogenic Traits Are Not Simple: Lessons from Phenylketonuria", Trends in Genetics 15(1999):267-72, at 267;
16. Katrina M. Dipple and Edward R. B. McCabe, "Phenotypes of Patients with 'Simple' Mendelian Disorders Are Complex Traits: Thresholds, Modifiers, and Systems Dynamics", American Journal of Human Genetics 66(2000):1729-35, at 1729;
17. Katrina M. Dipple and Edward R. B. McCabe, "Modifier Genes Convert 'Simple' Mendelian Disorders to Complex Traits", Molecular Genetics and Metabolism 71(2000):43-50, at 47;
18. Katrina M. Dipple and Edward R. B. McCabe, "Consequences of Complexity within Biological Networks: Robustness and Health, or Vulnerability and Disease", Molecular Genetics and Metabolism 74(2001):45-50, at 49-50.
19. Soraya de Chadarevian, "The Making of an Icon", Science 300(2003):255-57.
20. James D. Watson and Francis H. C. Crick, "Molecular Structure of Nucleic Acids", Nature 171(1953):737-38.
21. James D. Watson, The Double Helix: A Personal Account of the Discovery of Structure of DNA (New York: Readers Union, 1968).
22. Patricia Wald, "Future Perfect: Grammar, Genes, and Geography", New Literary History 31(2000):681-708
23. attributed to Leon Jaroff, "The Gene Hunt", Time, March 10, 1989, 67.
24. Nelkin, "Molecular Metaphors", 558-59.
25. Brigitte Nerlich, Robert Dingwall, and David D. Clarke, "The Book of Life: How the Completion of the Human Genome Project Was Revealed to the Public", Health: An Interdisciplinary Journal for the Social Study of Health, Illness, and Medicine 6(2002):445-69, at 450.
26. Nelkin, "Molecular Metaphors", 557.
27. Lionel S. Penrose, "The Influence of the English Tradition in Human Genetics", in Proceedings of the Third International Congress of Human Genetics, ed. James F. Crow and James V. Neel (Baltimore, 1967):13-25, at 22-23.
28. Huib Looren de Jong, "Genetic Determinism: How Not to Interpret Behavioral Genetics", Theory and Psychology 10(2000):615-37, at 621.
29. See generally Noel Ignatiev, How the Irish Became White (New York: Routledge, 1995);
30. Neil Foley, The White Scourge: Mexicans, Blacks, and Poor Whites: Texas Cotton Culture (Berkeley: University of California Press, 1997);
31. Dorothy Roberts, Killing the Black Body: Race, Reproduction, and the Meaning of Liberty (New York: Vintage Books, 1997).
32. Paul R. Billings, "Genetic Nondiscrimination", Nature Genetics 37(2005):559-60.
33. McCabe and McCabe, DNA: Promise and Peril, 185-88.
34. Kathy L. Hudson, M. K. Holohan, and Francis S. Collins, "Keeping Pace with the Times: The Genetic Information Nondiscrimination Act of 2008", New England Journal of Medicine 358(2008):2661-63;
35. Russell Korobkin and Rahul Rajkumar, "The Genetic Information Nondiscrimination Act: A Half-Step toward Risk Sharing", New England Journal of Medicine 359(2008):335-37;
36. Mark A. Rothstein, "Putting the Genetic Discrimination Act in Context", Genetics in Medicine 10(2008):655-56.
37. Linda L. McCabe and Edward R. B. McCabe, "Genetic Screening: Carriers and Affected Individuals", Annual Review of Genomics and Human Genetics 5(2004):57-69, at 57-58, 65.
38. Allen, "Social and Economic Origins", 79.
39. Neil Holtzman, "Eugenics and Genetic Testing", Science in Context 11(1998):397-417, at 408-409;
40. Charles J. Epstein, "Is Modern Genetics the New Eugenics?" Genetics in Medicines (2003):469-75, at 474.
41. Allen, "Social and Economic Origins", 85.
42. Allen, "Is a New Eugenics Afoot?" 59-61.
43. Epstein, "Is Modern Genetics the New Eugenics?" 473.
44. George C. Cunningham and D. Gwynne Tompkinson, "Cost and Effectiveness of the California Triple Marker Prenatal Screening Program", Genetics in Medicine 1(1999):199-206, at 199.
45. Judson, "Talking about the Genome", 769.
46. Julian Savulescu, "Procreative Beneficence: Why We Should Select the Best Children", Bioethics 15(2001):413-26, at 415.
47. Julian Savulescu, "Deaf Lesbians, 'Designer Disability', and the Future of Medicine", British Medical Journal 325(2002):771-73.
48. Details of the Nash case may be found in Sarah Franklin and Celia Roberts, Born and Made: An Ethnography of Preimplantation Genetic Diagnosis (Princeton, N. J.: Princeton University Press, 2006), 35, 62.
49. T. Scheck, "A Question of Life", Minneapolis Public Radio, October 18, 2000 (http://news.minnesota.publicradio.org/features/200010/18- scheckt-babies/).
50. Accounts of the Hashmi and Whitaker family cases are drawn from Franklin and Roberts, Born and Made, 62, 65-66.
51. Technologies used to screen for neonatal blood conditions such as beta-thalassemia are described in Urvashi Bhardwaj, Yao-Hua Zhang, and Edward R. B. McCabe, "Neonatal Hemoglobinopathy Screening: Molecular Genetic Technologies", Molecular Genetics and Metabolism 80(2003):129-37.
52. Franklin and Roberts, Born and Made, 62-63.
53. Online Mendelian Inheritance in Man (OMIM), "#105650, Diamond-Blackfan Anemia; DBA"
54. Franklin and Roberts, Born and Made, 65-66.
55. Barbara J. Evans, "Distinguishing Product and Practice Regulation in Personalized Medicine", Clinical Pharmacology & Therapeutics 81 (2007) 288-93, at 2, 88.
56. Nicole Ansani, Carl Sirio, Thomas Smitherman, Bethany Fedutes-Henderson, Susan Skledar, Robert J. Weber, Nathalie Zgheib, and Robert Branch, "Designing a Strategy to Promote Safe, Innovative Off-Label Use of Medications", American Journal of Medical Quality 21(2006):255-61, at 255.
57. Barbara J. Evans and David A. Flockhart, "The Unfinished Business of U. S. Drug Safety Regulation", Food and Drug Law Journal 61(2006):753-94, at 775.
58. Alan D. Berkenwald, "In the Name of Medicine", Annals of Internal Medicine 128(1998):246-50, at 248-49.
59. L. E. Smith, "The Practice of Medicine and Its Interface with Medical Regulation", A rchives of Facial and Plastic Surgery 1(1999):58-59;
60. James N. Thompson, "The Future of Medical Licensure in the United States", Academic Medicine 81(2006):S36-S39, at S38;
61. J. T. Rannazzisi, "The DEA's Balancing Act to Ensure Public Health and Safety", Clinical Pharmacology and Therapeutics 81(2007):805-806.
62. James Morrison and Peter Wickersham, "Physicians Disciplined by a State Medical Board" JAMA 279(1998):1889-93, at 1889.
63. Christopher Guadagnino, "The Rise of the Physician Employee", Physicians News Digest (1997):1-7, at 1.
64. Berkenwald, "In the Name of Medicine", 246.
65. Guadagnino, "The Rise of the Physician Employee", 5.
66. Allen, "Social and Economic Origins", 85.
67. Guadagnino, "The Rise of the Physician Employee", 7.
68. Kevin B. O'Reilly, "Confronting Eugenics: Does the Now Discredited Practice Have Relevance to Today's Technology?" AMNews, July 9, 2007, (http://www.ama.assn.org/amednews/2007/07/09/prsa0709.htm).
69. Franklin and Roberts, Born and Made, 15.
70. Nikolas Rose, The Politics of Life Itself, 3.
71. Andrew Murr, "The Body Parts Bandit?" Newsweek National News Web Exclusive, May 9, 2007 (http://www.msnbc.msn.com/id/17542038/site/newsweek/) .
72. John M. Broder, "UCLA Halts Donations of Cadavers for Research", New York Times, March 10, 2004.
73. UNOS (http://www.unos.org/).
74. N. J. Ortner, "U. S. Organ and Tissue Transplant Cost Estimates and Discussion", Milliman Research Reports 6 (2005) (www.transplantliving.org/ Content Documents/2005Milliman-Report.pdf).
75. Eli A. Friedman and Alan H. Friedman, "Payment for Donor Kidneys: Pros and Cons " Kidney International 69(2006):960-62.
76. Troyan Brennan, "Markets in Health Care: The Case of Renal Transplantation", Journal of Law, Medicine, and Ethics 35(2007):249-55, at 249.
77. Eli A. Friedman and Alan H. Friedman, "Payment for Donor Kidneys, 960-62.
78. Sanjay Kumar, "Police Uncover Large Scale Organ Trafficking in Punjab", British Medical Journal 326(2003):180.
79. McCabe and McCabe, DNA: Promise and Peril, 152-58.
80. GeneTests data as of August 23, 2007 (http://www.genetests.org/).
81. See http://www.genzyme.c0m/c0rp/investors/GENZ%20PR-072507.asp.
82. See http://www.genzyme.com/c0mp0nents/highlights/genz-p1-q2-2007.pdf.
83. See http://www.myriad.com/about/.
84. McCabe and McCabe, DNA: Promise and Peril, 195-97.
85. Centers for Disease Control and Prevention, American Society for Reproductive Medicine, and Society for Assisted Reproductive Technology, "2004 Assisted Reproduction Technology Success Rates: National Summary and Fertility Clinic Reports" (Atlanta, 2006): http://www.cdc.gov/art/art2004/ 508PDF/2004ART-Intr0-Nati0nal-Sum-t508.pdf.
86. Robert L. Gustofson, James H. Segars, and Frederick W. Larsen, "Cost Analysis of Ganirelix versus Luteal-Phase Lupron Downregulation per Assisted Reproductive Technology (ART) Cycle and Pregnancy Achieved", Fertility and Sterility 82(2004):S118-S119, at S118.
87. CDC et al., "2004 Assisted Reproduction Technology Success Rates"
88. Rene Almeling, "Selling Genes, Selling Genders: Egg Donors, Sperm Banks, and Medical Marketing Genetic Material", American Sociological Review 72(2007):319-40, at 321-22.
89. CDC et al., "2004 Assisted Reproduction Technology Success Rates"
90. Almeling, "Selling Genes, Selling Genders", 332;
91. Gustofson et al., "Cost Analysis of Ganirelix", S118.
92. Almeling, "Selling Genes, Selling Genders", 325-34.
93. McCabe and McCabe, DNA: Promise and Peril, 206.
94. Almeling, "Selling Genes, Selling Genders", 327.
95. CNN 2007 (http://www.cnn.com/2007/politics/07/23/debate.transcript/index. html).