Ethics instruction in an issues-oriented course on public health genetics

Health Education and Behavior

Volumn 29, Issue 1, 2002, Pages 43-60

  Modell, Stephen M ^a,b   Citrin, Toby ^a  

^a UNIVERSITY OF MICHIGAN SCHOOL OF PUBLIC HEALTH   (United States)

^b UNIVERSITY OF MICHIGAN   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIOMEDICAL AND BEHAVIORAL RESEARCH; CONFLICT; CURRICULUM; EDUCATION; ETHICS; GENETICS; GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH; HUMAN; MEDICAL ETHICS; POLICY; PUBLIC HEALTH; SOCIAL PSYCHOLOGY; UNITED STATES; UNIVERSITY OF MICHIGAN;

BIOMEDICAL AND BEHAVIORAL RESEARCH; GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH; UNIVERSITY OF MICHIGAN;

CONFLICT (PSYCHOLOGY); CURRICULUM; ETHICS; ETHICS, MEDICAL; GENETICS; HUMANS; MICHIGAN; PUBLIC HEALTH; PUBLIC POLICY; SOCIAL VALUES;

EID: 85047672742     PISSN: 10901981     EISSN: None     Source Type: Journal    
DOI: 10.1177/109019810202900106     Document Type: Article

References (96)

1. Centers for Disease Control and Prevention: Human Genome Epidemiology Network (HuGE Net). World Wide Web URL: http://www.cdc.gov/genetics/default.htm, 2001.
2. United States Department of Energy (DOE) - Oak Ridge National Laboratory: DOE Human Genome Project Web Site. World Wide Web URL: http://www.ornl.gov/hgmis/links.html, 2001.
3. National Bioethics Advisory Commission (NBAC) Web Site. World Wide Web URL: http:// bioethics.gov, 2001.
4. University of Kansas Medical Center: Genetics Education Center Web Site. World Wide Web URL: http://www.kumc.edu/gec/geneinfo.html, 2001.
5. Patton CV, Sawicki DS: Basic Methods of Policy Analysis and Planning (2nd ed.). Englewood Cliffs, NJ, Prentice Hall, 1993.
6. Reilly PR, Page DC: We're off to see the genome. Nat Genet 20(1):15-17, 1998.
7. Nelkin D: Genetic screening: What it means for health and ethics in the future. Curr Issues Public Health 2(2):47-50, 1996.
8. Murray TH: Ethical issues in human genome research. FASEB J 5(1):55-60, 1991.
9. O'Leary LA, Collins DL: Using the Internet to disseminate genetics information for public health, in Khoury MJ, Burke W, Thomson EJ (eds.): Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. New York, Oxford University Press, 2000, pp. 603-615.
10. Kitcher P: The Lives to Come: The Genetic Revolution and Human Possibilities. New York, Simon & Schuster, 1996.
11. Alper JS, Beckwith J: Genetic fatalism and social policy: The implications of behavior genetics research. Yale J Biol Med 66(6):511-524, 1994.
12. Wilder DI: Persuasion and coercion for health: Ethical issues in government efforts to change life-styles. Milbank Memorial Fund Quarterly 56(3):303-338, 1978.
13. Guttman N: Ethical dilemmas in health campaigns. Health Commun 9:155-190, 1997.
14. Paul DB: Eugenic anxieties, social realities, and political choices. Soc Res 59(3):663-683, 1992.
15. Duster T: Backdoor to Eugenics. New York, Routledge, 1990.
16. Kroner HP: From eugenics to genetic screening: Historical problems of human genetic applications, in Chadwick R, Shickle D, ten Have HT, Wiesing U (eds.): The Ethics of Genetic Screening. Dordrecht, the Netherlands, and Boston, Kluwer, 1999, pp. 131-145.
17. Wikler DI: Can we learn from eugenics? J Med Ethics 25(2):183-194, 1999.
18. Pernick MS: Eugenics and public health in American history. Am J Public Health 87(11):1767-1772, 1997.
19. Macrina FL: Scientific Integrity: An Introductory Text with Cases (2nd ed.). Washington, DC, ASM, 2000.
20. Holtzman NA, Andrews LB: Ethical and legal issues in genetic epidemiology. Epidemiol Rev 19(1):163-174, 1997.
21. Coughlin SS, Soskolne CL, Goodman KW: Case Studies in Public Health Ethics. Washington, DC, American Public Health Association, 1997.
22. Penslar EL (ed.): Research Ethics: Cases and Materials. Bloomington, Indiana University Press, 1995.
23. Marshall E: Gene therapy on trial. Science 288(5468):951-957, 2000.
24. Kolehmainen S: The dangerous promise of gene therapy. Gene Watch 13(1):1,6-9, 2000.
25. Dickens BM: Legal and ethical challenges in gene therapy. Transfusion Science 17(1):191-196, 1996.
26. Juengst ET: "Prevention" and the goals of genetic medicine. Hum Gene Ther 6(12):1595-1605, 1995.
27. Khoury MJ: Public Health Policy Forum: From genes to public health: The applications of genetic technology in disease prevention. Am J Public Health 86(12):1717-1722, 1996.
28. Hoedemaekers R, ten Have HT, Chadwick R: Genetic screening: A comparative analysis of three recent reports. J Med Ethics 23(3):135-141, 1997.
29. Baumiller RC, Comley S, Cunningham G, et al: Code of ethical principles for genetics professionals (and explication). Am J Med Genet 65(3):177-183, 1996.
30. National Society of Genetic Counselors: Code of Ethics. World Wide Web URL: http:// www.nsgc.org/about_code.asp, 1991.
31. American Public Health Association: Policy Statement #8732PP: Genetics and public health. Am J Public Health 78(2):209-211, 1988.
32. Shickle D: The Wilson and Jungner principles of screening and genetic testing, in Chadwick R, Shickle D, ten Have HT, Wieing U (eds.): The Ethics of Genetic Screening. Dordrecht, the Netherlands, and Boston: Kluwer, 1999, pp. 1-34.
33. Natowicz MR, Alper JS: Genetic screening: Triumphs, problems, and controversies. J Public Health Policy 12(4):475-491, 1991.
34. Frankenburg WK: Principles of screening, in Frankenburg WK, Camp BW (eds.): Pediatric Screening Tests. Springfield, IL, Charles C Thomas, 1975, pp. 9-37.
35. Alper JS, Geller LN, Barash CI, et al: Genetic discrimination and screening for hemochromatosis. J Public Health Policy 15(3):345-358, 1994.
36. Atwood K, Colditz GA, Kawachi I: From public health science to prevention policy: Placing science in its social and political contexts. Am J Public Health 87(10):1603-1606, 1997.
37. Thomas SB, Quin SC: Tuskegee: A red flag for bioethics. 128th American Public Health Association Annual Meeting & Exposition Abstracts 5117.0:506, 2000 (and accompanying session).
38. Thomas SB, Curran JW: Tuskegee: From science to conspiracy to metaphor. Am J Med Sci 317(1):1-8, 1999.
39. Coughlin SS, Etheredge GD: Remember Tuskegee: Public health student knowledge of the ethical significance of the Tuskegee Syphilis Study. Am J Prev Med 12(4):242-246, 1996.
40. Panel session: Informing genetics policy: The future of public participation, in Modell SM, Hartman TC (eds.): Genome Horizons: Public Deliberations and Policy Pathways - Conference Proceedings. Ann Arbor, Michigan, Genome Technology & Reproduction: Values & Public Policy Project, 1998.
41. Grady C: Science in the service of healing. Hastings Cent Rep 28(6):34-38, 1998.
42. Nickens H: The genome project and health services for minority populations, in Murray TH, Rothstein MA, Murray RF, Jr (eds.): The Human Genome Project and the Future of Health Care. Bloomington, Indiana University Press, 1996, pp. 58-78.
43. King PA: The past as prologue: Race, class, and gene discrimination, in Annas GJ, Elias S (eds.): Gene Mapping: Using Law and Ethics as Guides. New York, Oxford University Press, 1992, pp. 94-111.
44. Jackson F: African-American responses to the Human Genome Project. Public Understanding of Science 8(3):181-191, 1999.
45. Dukapoo FC: Commentary on "Scientific limitations and ethical ramifications of a non-representative Human Genome Project: African American responses." An American Indian perspective. Sci Eng Ethics 4(2):171-180, 1998.
46. Weiss JO, Allen L, Marche-Escola S, et al: Consumer perspectives on genetic testing, research and services for ethnoculturally diverse populations. Community Genetics 1(3):118-123, 1998.
47. Dicke AA: Genetic risk and voluntary insurance. Contingencies 8(5):52-56, 1996.
48. Kass NE: Insurance for the insurers: The use of genetic tests. Hastings Cent Rep 22(6):6-1, 1992.
49. Pokorski RJ: A test for the insurance industry. Nature 391(6670):835-836, 1998.
50. Suter SM, Goldman EB: Policy Approaches/Recommendations. Ann Arbor, MI, Genome Technology & Reproduction: Values & Public Policy Project, 1998.
51. National Bioethics Advisory Commission: Research Involving Human Biological Materials: Ethical Issues and Policy Guidance. World Wide Web URL: http://bioethics.gov/pubs.html, 1999.
52. American Society of Human Genetics: ASHG Report: Statement on informed consent for genetic research. Am J Hum Genet 59(2):471-474, 1996.
53. Clayton EW, Steinberg KK, Khoury MJ, Thomson E, et al: Consensus statement: Informed consent for genetic research on stored tissue samples. JAMA 274(22):1786-1792, 1995.
54. Annas GJ, Glantz LH, Roche PA: The Genetic Privacy Act and Commentary. World Wide Web URL: http://www.ornl.gov/TechResources/Human_Genome/resource/privacy/privacy1.html, 1995.
55. Robertson JA: Privacy issues in second stage genomics. Jurimetrics 40:59-76, 1999.
56. Burris S, Gostin LO, Tress D: Public health surveillance of genetic information: Ethical and legal responses to social risk, in Khoury MJ, Burke W, Thomson EJ (eds.): Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. New York, Oxford University Press, 2000, pp. 527-546.
57. Murray TH: Genetic exceptionalism and "future diaries": Is genetic information different from other medical information?, in Rothstein M (ed.): Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven, CT, Yale University Press, 1997, pp. 60-73.
58. Faden R: Reproductive genetic testing and the ethics of parenting. Fetal Diagn Ther 8 (Suppl. 1):142-147, 1993.
59. Robertson JA: Procreative liberty and human genetics. Emory Law J 39:697-719, 1990.
60. Asch A: Public health matters: Prenatal diagnosis and selective abortion: A challenge to practice and policy. Am J Public Health 89(11):1649-1657, 1999.
61. Parens E, Asch A: The disability rights critique of prenatal genetic testing: Reflections and recommendations. Hastings Cent Rep 29(5):S1-22, 1999.
62. Post SG: Selective abortion and gene therapy: Reflections on human limits. Hum Gene Ther 2(3):229-233, 1991.
63. Braga S: Reproductive genetic testing and eugenics. Fetal Diagn Ther 8 (Suppl. 1):210-212, 1993.
64. Collins F: Shattuck Lecture - Medical and societal consequences of the Human Genome Project. N Engl J Med 341(1):28-37, 1999.
65. Khoury MJ: Genetic epidemiology and the future of disease prevention and public health. Epidemiol Rev 19(1):175-180, 1997.
66. Piper MA, Lindenmayer JM, Lengerich EJ, et al: The role of state public health agencies in genetics and disease prevention: Results of a national survey. Public Health Rep 116(1):22-31, 2001.
67. Hanson MJ: Religious voices in biotechnology: The case of gene patenting. Hastings Cent Rep 27(6):Suppl. 1-19, 1997.
68. Campbell CS: In whose image? Religion and the controversy of human cloning. Second Opinion 1:24-43, 1999.
69. Silver LM: Remaking Eden: Cloning and Beyond in a Brave New World. New York, Avon Books, 1997.
70. Fleck L: Genetic Ethics: Relevant Moral Values/Moral Considerations (Fall Community Dialogues). Ann Arbor, MI, Genome Technology and Reproduction: Values and Public Policy Project, 1996.
71. Beauchamp D: Introduction: Ethical theory and public health, in Beauchamp D, Steinbock B (eds.): New Ethics for the Public's Health. New York, Oxford University Press, 1999, pp. 3-23.
72. Lappe M: Ethics and public health, in Coughlin SS (ed.): Ethics in Epidemiology and Clinical Research: Annotated Readings. Newton, MA, Epidemiology Resources, 1995, pp. 181-193.
73. Pellegrino ED: Autonomy and coercion in disease prevention and health promotion. Theor Med 5(1):83-91, 1984.
74. Weed DL, Coughlin SS: Ethics in cancer prevention and control, in Greenwald P, Kramer BS, Weed DL (eds.): Cancer Prevention and Control. New York, Marcel Dekker, 1995, pp. 497-507.
75. Wertz DC: Ethical and legal implications of the new genetics: Issues for discussion. Soc Sci Med 35(4):495-505, 1992.
76. Burgess MM, Hayden MR: Patients' rights to laboratory data: Trinucleotide repeat length in Huntington disease. Am J Med Genet 62(1):6-9, 1996.
77. Jennings B: Beyond distributive justice in health reform. Hastings Cent Rep 26(6):14-15, 1996.
78. Beauchamp DE: The Health of the Republic: Epidemics, Medicine, and Moralism as Challenges to Democracy. Philadelphia, Temple University Press, 1988.
79. Bayertz K: What's special about molecular genetic diagnostics? J Med Philos 23(3):247-254, 1998.
80. Lachmann PJ: Public health and bioethics. J Med Philos 23(3): 297-302, 1998.
81. Cole P: The moral bases for public health interventions. Epidemiology 6(1):78-83, 1994.
82. Wilfond BS, Thomson EJ: Models of public health genetic policy development, in Khoury MJ, Burke W, Thomson EJ (eds.): Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. New York, Oxford University Press, 2000, pp. 61-81.
83. Fost N: Ethical implications of screening asymptomatic individuals, in Beauchamp D, Steinbock B (eds.): New Ethics for the Public's Health. New York, Oxford University Press, 1999, pp. 344-352.
84. Mastroianni AC, Kahn JP: The importance of expanding current training in the responsible conduct of research. Acad Med 73(12):1249-1254, 1998.
85. Dibbern DA, Wold E: Workshop-based learning: A model for teaching ethics. JAMA 274(9):770-771, 1995.
86. Gutmann A, Thompson D: Deliberating about bioethics. Hastings Cent Rep 27(3):38-41, 1997.
87. Garland MJ, Hasnain R: Community responsibility and the development of Oregon's health care priorities. Business & Professional Ethics J 9(3 & 4):183-200, 1990.
88. Fleck L: Just Caring: Conflicting Rights/Uncertain Responsibilities. Lansing, MI, Just Caring Program, 1992.
89. Young IM: Inclusion and Democracy. New York, Oxford University Press, 2000.
90. Yankelovich D: The Magic of Dialogue. New York, Simon & Schuster, 1999.
91. Bohman J: Public Deliberation: Pluralism, Complexity, and Democracy. Cambridge, MIT Press, 1996.
92. Fishkin JS: Democracy and Deliberation: New Directions for Democratic Reform. New Haven, CT, Yale University Press, 1991.
93. Coughlin SS: Model curricula in public health ethics. Am J Prev Med 12(4):247-251, 1996.
94. Morris MW, Sharp RR, Freeman WL, et al: The role of community review in evaluating the risks of human genetic variation research. Am J Hum Genet 64(6):1719-1727, 1999.
95. Israel B, Schulz AJ, Parker EA, Becker AB: Review of community-based research: Assessing partnership approaches to improve public health. Annu Rev Public Health 19:173-202, 1998.
96. Austin M, Peyser P: The multidisciplinary nature of public health genetics in research and education, in Khoury MJ, Burke W, Thomson EJ (eds.): Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. New York, Oxford University Press, 2000, pp. 83-100.