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Chapter 8 
 Toby Citrin and Stephen M. Modell

PHELSI Literature (Full List)

  1. American Public Health Association. Public Health Code of Ethics. Washington, D.C.; 2001. Available at: http://www.apha.org/codeofethics This reference links to a non-governmental website. (last accessed 3/2007)
  2. Annas GJ, Glantz LH, Roche PA. The Genetic Privacy Act and Commentary. Washington, D.C.;1995. Available at: http://www.ornl.gov/TechResources/Human_Genome/resource/privacy/privacy1.html. (last accessed 3/2007) See also, Final Report of the project, “Guidelines for Protecting Privacy of Information Stored in Genetic Data Banks”, funded by the Ethical, Legal & Social Implications of the Human Genome Project, Office of Energy Research, U.S. Department of Energy, No. DE-FG02-93ER61626.
  3. Annas GJ and Elias S, Eds. Gene Mapping: Using Law and Ethics as Guides. New York:Oxford Univ. Press;1992.
  4. Andrews LB. Future Perfect: Confronting Decisions about Genetics. New York:Columbia Univ. Press;2001.
  5. Atkinson K, Zuckerman B, Sharfstein JM, Levin D, Blatt RJ, Koh HK. A public health response to emerging technology: Expansion of the Massachusetts newborn screening program. Public Health Rep 2001;116:122-131.
  6. Austin MA. Ethical issues in human genome epidemiology: A case study based on the Japanese American family study in Seattle, Washington. Am J Epidemiol 2002;155: 585-592.
  7. Beauchamp DE. Community: the neglected tradition of public health. Hastings Cent Rep 1985;15:28-36.
  8. Beauchamp DE and Steinbock B, editors. New Ethics for the Public’s Health. New York: Oxford Univ. Press;1999.
  9. Botkin JR. Protecting the privacy of family members in survey and pedigree research. JAMA 2001;285:207-211.
  10. Brock DW. The human genome project and human identity. In: Weir RF, Lawrence SC, Fales E, editors. Genes and Human Self-Knowledge. Iowa City, IA:Univ. of Iowa Press;1994:18-33.
  11. Burke W, Coughlin SS, Lee NC, Weed DL, Khoury MJ. Application of population screening principles to genetic screening for adult-onset conditions. Genet Test 2001;5: 201-211.
  12. Burke W, Cogswell ME, McDonnell SM, Franks A. Public health strategies to prevent the complications of hemochromatosis. In: Khoury M, Burke W, Thomson E, editors, Genetics and Public Health in the 21st Century. New York:Oxford Univ. Press;2000:447-462.
  13. Burris S, Gostin LO, Tress D. Public health surveillance of genetic information: Ethical and legal responses to social risk. In: Khoury M, Burke W, Thomson E, editors, Genetics and Public Health in the 21st Century. New York:Oxford Univ. Press;2000:527-546.
  14. Callahan D, Jennings B. Ethics and public health: Forging a strong relationship. Am J Public Health 2002;92:169-176.
  15. Caufield T. Genetics services and market forces. Nat Rev Genet 2002;3:734.
  16. Centers for Disease Control and Prevention. Eliminating Racial & Ethnic Health Disparities. Atlanta, GA: CDC Office of Minority Health;2004. Available at: http://www.cdc.gov/omh/AboutUs/disparities.htm. (last accessed 3/2007)
  17. Citrin T. Communities of Color and Genetics Policy Project: Policy Reports and Recommendations. Ann Arbor, MI: University of Michigan;2001. Available at: http://www.sph.umich.edu/genpolicy This reference links to a non-governmental website. (last accessed 3/2007)
  18. Clayton EW. Ethical, legal, and social implications of genomic medicine. NEJM 2003;349:562-9.
  19. Clayton EW. What should be the role of public health in newborn screening and prenatal diagnosis?. Am J Prev Med 1999;16:111-115.
  20. Clayton EW, Steinberg KK, Khoury MJ, Thomson E, Andrews L, Kahn MJE, Kopelman LM, Weiss JO. Informed consent for genetic research on stored tissue samples. JAMA 1995;274:1786-1792.
  21. Cogswell ME, Burke W, McDonnell SM, Franks AL. Screening for hemochromatosis: A public health perspective. Am J Prev Med 1999;16:134-140.
  22. Cole P. The moral bases for public health interventions. Epidemiol 1995;6:78-83.
  23. Coughlin SS, Miller DS. Public health perspectives on testing for colorectal cancer susceptibility genes. Am J Prev Med 1999;16:99-104.
  24. Coughlin SS, Soskolne CL, Goodman KW. Case Studies in Public Health Ethics. Washington, D.C.:American Public Health Association;1997.
  25. Coughlin SS and Beauchamp TL, editors. Ethics and Epidemiology. New York:Oxford Univ. Press;1996.
  26. Coughlin SS, Etheridge GD, Metayer C, Martin SA, Jr. Remember Tuskegee: Public health student knowledge of the ethical significance of the Tuskegee Syphilis Study. Am J Prev Med 1996;12:242-6.
  27. Coughlin SS, Ed. Ethics in Epidemiology and Clinical Research. Newton, MA:Epidemiology Resources Inc.;1995.
  28. Coy KL. The current privacy environment: Implications for third-party research. J Contin Educ Health Prof 2001;21:203-214.
  29. Duster T. Backdoor to Eugenics. New York:Routledge;1990.
  30. Ellsworth DL, Sholinsky P, Jaquish C, Fabsitz RR, Manolio TA. Coronary heart disease: At the interface of molecular genetics and preventive medicine. Am J Prev Med 1999;16:122-133.
  31. EvansGroup. Washington State Genetics Education Plan. Seattle, WA;1997. Available at: http://mchneighborhood.ichp.edu/wagenetics/media/wagenetic.pdf This reference links to a non-governmental website. (last accessed 3/2007)
  32. Faden RR. Ethical issues in government sponsored public health campaigns. Health Educ Q 1987;14:27-37.
  33. Fost N. Ethical implications of screening asymptomatic individuals. In: Beauchamp D and Steinbock B, editors, New Ethics for the Public’s Health. New York:Oxford Univ. Press;1999:344-352.
  34. Garland MJ. Experts and the public: A needed partnership for genetic policy. Public Understand Sci 1999;8:241-254.
  35. Geller G, Bernhardt BA, Holtzman NA. The media and public reaction to genetic research. JAMA 2002;287:773.
  36. Gilbert F. A proposed role for consumers and the general public as consumers of health care in community-wide genetic testing. Genet Test 2002;6:23-24.
  37. Gold EB. Confidentiality and privacy protection in epidemiologic research. In: Coughlin SS and Beauchamp TL, editors, Ethics and Epidemiology. New York:Oxford Univ. Press;1996:128-141.
  38. Gollust SE, Hull SC, Wilfond BS. Limitations of direct-to-consumer advertising for clinical genetic testing. JAMA 2002;288:1762-7.
  39. Gostin LO. National health information privacy regulations under the Health Insurance Portability and Accountability Act. JAMA 2001;285: 3015-21.
  40. Gostin LO. Genetic privacy. J Law Med Ethics 1995;23:320-30.
  41. Hiller EH, Landenburger G, Natowicz MR. Public participation in medical policy-making and the status of consumer autonomy: the example of newborn-screening programs in the United States. Am J Public Health 1997;87:1280-8.
  42. Holtzman NA, Andrews LB. Ethical and legal issues in genetic epidemiology. Epidemiol Rev 1997;19:163-74.
  43. Kitcher P. The Lives to Come. New York:Simon & Schuster;1996.
  44. Kaplan D. Prenatal screening and diagnosis: The impact on persons with disabilities. In: Rothenberg K and Thomson E, editors, Women and Prenatal Testing: Facing the Challenges of Genetic Technology. Columbus, OH:Ohio State Univ. Press;1994:49-61.
  45. Kardia SLR, Modell SM, Peyser PA. Family-centered approaches to understanding and preventing coronary heart disease. Am J Prev Med 2003;24:143151.
  46. Kass NE. An ethics framework for public health. Am J Public Health 2001;91:1776-82.
  47. Kaye CI, Proud VK. Genetics education: guidelines and resources for the public health. In: Freeman SB, Hinton CF, and Elsas, II, LJ, editors, Genetic Services: Developing Guidelines for the Public’s Health. Atlanta, GA:Council of Regional Networks for Genetics Services (CORN);1996:198-200.
  48. Kendler KS. Family history information in biomedical research. J Contin Educ Health Prof 2001;21:215-23.
  49. Khoury MJ, Thrasher JF, Burke W, Gettig EA, Fridinger F, Jackson R. Challenges in communicating genetics: a public health approach. Genet in Med 2000;2:198-202.
  50. Khoury M, Burke W, Thomson E, editors. Genetics and Public Health in the 21st Century. New York:Oxford Univ. Press;2000.
  51. Khoury MJ. Relationship between medical genetics and public health: changing the paradigm of disease prevention and the definition of a genetic disease. Am J Med Genet 1997;71:289-91.
  52. Khoury MJ, and the Genetics Working Group. From genes to public health: The applications of genetic technology in disease prevention. Am J Public Health 1996;86:1717-22.
  53. Kulynych J, Korn D. Use and disclosure of health information in genetic research: weighing the impact of the new federal medical privacy rule. Am J Law Med 2002;28:309-24.
  54. Lachmann PJ. Public health and bioethics. J Med Philos 1998;23:297-302.
  55. Lane SD, Rubinstein RA, Cibula D, Webster N. Towards a public health approach to bioethics. In: Cantwell A-M, Friedlander E, Trainor ML, editors, Ethics and Anthropology: Facing Future Issues in Human Biology, Globalism, and Cultural Property. Ann NY Acad Sci 2000;925:25-36.
  56. Lantz PM, Viruell-Fuentes E, Israel BA, Softley D, Guzman R. Can communities and academia work together on public health research? Evaluation results from a community-based participatory research partnership in Detroit. J Urban Health 2001;78:495-507.
  57. Lappé M. Ethics and public health. In: Last JM, ed., Maxcy-Rosenau’s Public Health and Preventive Medicine. Norwalk, CT:Appleton-Century-Crofts;1986:1867-77.
  58. Lee SS, Mountain J, Koenig BA. The meanings of “race” in the new genomics: implications for health disparities research. Yale J Health Policy Law Ethics 2001;1:33-75.
  59. Liebman J. Some legal, social, and ethical issues related to the genetic testing revolution, as exemplified in the long QT syndrome. J Electrocardiol 2001;34:183-8.
  60. McCabe LL, McCabe ERB. Newborn screening as a model for population screening. Molec Genet Metab 2002;75:299-307.
  61. McCabe E, Tonniges T, and the Newborn Screening Task Force. Serving the family from birth to the medical home: a report from the Newborn Screening Task Force conconvened in Washington DC, May 10-11, 1999. Pediatrics 2000;106:383-423.
  62. McInerney J. Education in a genomic world. J Med Philos 2002;27:369-90.
  63. McInerney JD. The Human Genome Project and biology education. BioSci 1995;45:786-91.
  64. McQuillan GM, Porter KS, Agelli M, Kington R. Consent for genetic research in a general population: the NHANES experience. Genet in Med 2003;5:35-42.
  65. Michigan Center for Genomics and Public Health. Ethical, Legal, and Social Issues in Public Health Genetics. Ann Arbor, MI;2002. Available at: http://www.sph.umich.edu/genomics/Focus_Areas/PHELSI.html This reference links to a non-governmental website. (last accessed 3/2007)
  66. Modell SM, Citrin T. Ethics instruction in an issues-oriented course on public health genetics. Health Educ Behav 2002;29:43-60.
  67. Murrelle L, McCarthy CR. What’s so important about conducting research involving third parties?. J Contin Educ Health Prof 2001;21:198-202.
  68. National Conference of State Legislatures. Genetic Technologies Project. Denver, CO;2003.
  69. Natowicz MR, Ard C. The commercialization of clinical genetics: an analysis of interrelations between academic centers and for-profit clinical genetics diagnostics companies. J Genet Couns 1997;6:337-55.
  70. Natowicz MR, Alper JS. Genetic screening: triumphs, problems, and controversies. J Public Health Policy 1991;12:475-91.
  71. New England Regional Genetics Group (NERGG). Optimizing genetics services in a social, ethical, and policy context. The Genetic Resource 1996;10:1-107.
  72. Office of Genomics and Disease Prevention, Centers for Disease Control and Prevention. Family History as a Tool for Public Health and Preventive Medicine: A Public Health Perspective. Atlanta, GA;2003.
  73. Pelias MK, Markward NJ. Newborn screening, informed consent, and future use of archived tissue samples. Genet Test 2001;5:179-85.
  74. Pelias MZ. Federal regulations and the future of research in human and medical genetics. J Contin Educ Health Prof 2001;21:238-46.
  75. Pellegrino ED. Autonomy and coercion in disease prevention and health promotion. Theoretical Med 1984;5:83-91.
  76. Pernick MS. Eugenics and public health in American history. Am J Public Health 1997;87:1767-72.
  77. Petersen A. Biofantasies: genetics and medicine in the print news media. Soc Sci Med 2001;52:1255-68.
  78. Press N, Clayton EW. Genetics and public health: informed consent beyond the clinical encounter. In: Khoury M, Burke W, Thomson E, editors, Genetics and Public Health in the 21st Century. New York:Oxford Univ. Press;2000:505-526.
  79. Rothstein MA. Rethinking the meaning of public health. J Law Med Ethics 2002;30:144-49.
  80. Shultz MM. Legal and ethical considerations in securing consent to epidemiologic research in the United States. In: Coughlin SS and Beauchamp TL, editors, Ethics and Epidemiology. New York:Oxford Univ. Press;1996.
  81. Steinberg KK, Sanderlin KC, Ou C-Y, et al. DNA banking in epidemiologic studies. Epidemiol Rev 1997;19:156-62.
  82. Therrell BL. U.S. newborn screening policy dilemmas for the twenty-first century. Molec Genet Metab 2001;74:64-74.
  83. Therrell BL, Hannon WH, Pass KA, Lorey F, Brokopp C, Eckman J, et al. Guidelines for the retention, storage, and use of residual dried blood spot samples after newborn screening analysis: statement of the Council of Regional Networks for Genetic Services. Biochem Molec Med 1996;57:116-24.
  84. Turnock BJ. Public Health : What It Is and How It Works. Gaithersburg, MD:Aspen Publishers;1997.
  85. Wertz DC. Ethical and legal implications of the new genetics: issues for discussion. Soc Sci Med 1992;35:495-505.
  86. Wikler DI. Persuasion and coercion for health. Milbank Memorial Fund Q 1978;56:303-38.
  87. Wilfond B, Rothenberg LS. Ethical issues in cystic fibrosis newborn screening: from data to public health policy. Curr Opin Pulm Med 2002;8:529-34.
  88. Yankelovich D. The Magic of Dialogue. New York:Simon & Schuster;1999.
  89. Yoon PW, Scheuner MT, Khoury MJ. Research priorities for evaluating family history in the prevention of common chronic diseases. Am J Prev Med 2003;24:128-35.
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  Provides link to non-governmental sites and does not necessarily represent the  views of the Centers for Disease Control and Prevention.
Page last reviewed: June 8, 2007 (archived document)
Page last updated: September 10, 2007
Content Source: National Office of Public Health Genomics