"Genetic Exceptionalism" in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests

Annals of Internal Medicine

Volumn 138, Issue 7, 2003, Pages 571-575

  Green, Michael J ^a   Botkin, Jeffrey R ^b  

^a PENN STATE COLLEGE OF MEDICINE   (United States)

^b NONE

Author keywords

[No Author keywords available]

Indexed keywords

CHOLESTEROL;

ETHICS; GENE; GENETIC PREDISPOSITION; GENETIC PROCEDURES; HUMAN; INFORMED CONSENT; MEDICAL RECORD; PERCEPTION; PHYSICAL EXAMINATION; PREDICTION; PRIORITY JOURNAL; PRIVACY; PSYCHOLOGICAL ASPECT; REVIEW; ARTICLE; FAMILY; GENETIC PRIVACY; GENETIC SCREENING; GENETICS AND REPRODUCTION; MEDICAL ETHICS; MENTAL STRESS; SOCIAL PSYCHOLOGY;

GENETICS AND REPRODUCTION;

ETHICS, MEDICAL; FAMILY; GENETIC PREDISPOSITION TO DISEASE; GENETIC PRIVACY; GENETIC SCREENING; GENETIC TECHNIQUES; HUMANS; PREJUDICE; STRESS, PSYCHOLOGICAL;

EID: 0037387855     PISSN: 00034819     EISSN: None     Source Type: Journal    
DOI: 10.7326/0003-4819-138-7-200304010-00013     Document Type: Review

References (84)

1. Fost N. Genetic diagnosis and treatment. Ethical considerations. Am J Dis Child. 1993;147:1190-5. [PMID: 8237913]
2. Statement of the American Society of Human Genetics on genetic testing for breast and ovarian cancer predisposition. Am J Hum Genet. 1994;55:i-iv. [PMID: 7977337]
3. Wilfond BS, Rothenberg KH, Thomson EJ, Lerman C. Cancer genetic susceptibility testing: ethical and policy implications for future research and clinical practice. Cancer Genetic Studies Consortium, National Institutes of Health. J Law Med Ethics. 1997;25:243-51, 230. [PMID: 11066506]
4. Collins FS. BRCA1-lots of mutations, lots of dilemmas [Editorial]. N Engl J Med. 1996;334:186-8. [PMID: 8531977]
5. Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: National Academy Pr; 1994.
6. Schulman JD, Stern HJ. Genetic predisposition testing for breast cancer. Cancer J Sci Am. 1996;2:244. [PMID: 9166539]
7. Hoskins KF, Stopfer JE, Calzone KA, Merajver SD, Rebbeck TR, Garber JE, et al. Assessment and counseling for women with a family history of breast cancer. A guide for clinicians. JAMA. 1995;273:577-85. [PMID: 7837392]
8. Biesecker BB, Boehnke M, Calzone K, Markel DS, Garber JE, Collins FS, et al. Genetic counseling for families with inherited susceptibility to breast and ovarian cancer. JAMA. 1993;269:1970-4. [PMID: 8352830]
9. Geller G, Bernhardt BA, Helzlsouer K, Holtzman NA, Stefanek M, Wilcox PM. Informed consent and BRCA1 testing [Letter]. Nat Genet. 1995;11:364. [PMID: 7493013]
10. Geller G, Botkin JR, Green MJ, Press N, Biesecker BB, Wilfond B, et al. Genetic testing for susceptibility to adult-onset cancer. The process and content of informed consent. JAMA. 1997;277:1467-74. [PMID: 9145720]
11. Bernhardt BA, Geller G, Strauss M, Helzlsouer KJ, Stefanek M, Wilcox PM, et al. Toward a model informed consent process for BRCA1 testing: a qualitative assessment of women's attitudes. J Genet Couns. 1997;6:207-22. [PMID: 11656642]
12. Statement on use of DNA testing for presymptomatic identification of cancer risk. National Advisory Council for Human Genome Research. JAMA. 1994; 271:785. [PMID: 8114217]
13. Statement of the American Society of Clinical Oncology: genetic testing for cancer susceptibility, Adopted on February 20, 1996. J Clin Oncol. 1996;14: 1730-6. [PMID: 8622094]
14. www.hcfa.gov/medicaid/hipaa/online. Accessed 19 October 2001.
15. Enhancing the Oversight of Genetic Tests: Recommendations of the SACGT. Secretary's Advisory Committee on Genetic Testing. Bethesda, MD: National Institutes of Health; 2000.
16. de Vries BB, Halley DJ, Oostra BA, Niermeijer MF. The fragile X syndrome. J Med Genet. 1998;35:579-89. [PMID: 9678703]
17. de Vries BB, Mohkamsing S, van den Ouweland AM, Mol E, Gelsema K, van Rijn M, et al. Screening for the fragile X syndrome among the mentally retarded: a clinical study. The Collaborative Fragile X Study Group. J Med Genet. 1999;36:467-70. [PMID: 10874635]
18. McGiniss MJ, Kaback MM. Carrier screening. In: Rimoin DL, Connor JM, Pyeritz RE, eds. Emory and Rimoin's Principles and Practice of Medical Genetics. 3rd ed. New York: Churchill Livingstone; 1997:537.
19. Flinter FA. Preimplantation genetic diagnosis [Editorial]. BMJ. 2001;322: 1008-9. [PMID: 11325751]
20. Wilfond BS, Fost N. The cystic fibrosis gene: medical and social implications for heterozygote detection. JAMA. 1990;263:2777-83. [PMID: 11653890]
21. Scriver CR, Kaufman S, Eisensmith RC, Woo SLC. The hyperphenylalaninemias. In: Scriver CR, Beaudet AL, Sly WS, Valle D, eds. The Metabolic and Molecular Bases of Inherited Disease. 7th ed. New York: McGraw-Hill; 1995: 1052.
22. Miki Y, Swensen J, Shattuck-Eidens D, Futreal PA, Harshman K, Tavtigian S, et al. A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science. 1994;266:66-71. [PMID: 7545954]
23. Wooster R, Neuhausen SL, Mangion J, Quirk Y, Ford D, Collins N, et al. Localization of a breast cancer susceptibility gene, BRCA2, to chromosome 13q12-13. Science. 1994;265:2088-90. [PMID: 8091231]
24. Wooster R, Bignell G, Lancaster J, Swift S, Seal S, Mangion J, et al. Identification of the breast cancer susceptibility gene BRCA2. Nature. 1995;378: 789-92. [PMID: 8524414]
25. Marra G, Boland CR. Hereditary nonpolyposis colorectal cancer: the syndrome, the genes, and historical perspectives. J Natl Cancer Inst. 1995;87:1114-25. [PMID: 7674315]
26. Struewing JP, Hartge P, Wacholder S, Baker SM, Berlin M, McAdams M, et al. The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med. 1997;336:1401-8. [PMID: 9145676]
27. Post SG, Whitehouse PJ, Binstock RH, Bird TD, Eckert SK, Farrer LA, et al. The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective. JAMA. 1997;277:832-6. [PMID: 9052715]
28. Corder EH, Saunders AM, Strittmatter WJ, Schmechel DE, Gaskell PC, Small GW, et al. Gene dose of apolipoprotein E type 4 allele and the risk of Alzheimer's disease in late onset families. Science. 1993;261:921-3. [PMID: 8346443]
29. Juengst ET. Ethics of prediction: genetic risk and the physician-patient relationship. Genome Sci Technol. 1995;1:21-36. [PMID: 11660453]
30. Fost N. Ethical implications of screening asymptomatic individuals. FASEB J. 1992;6:2813-7. [PMID: 1634044]
31. Capron AM. Which ills to bear?: reevaluating the "threat" of modern genetics. Emory Law J. 1990;39:665-96. [PMID: 11653905]
32. Troy ES. The Genetic Privacy Act: an analysis of privacy and research concerns. J Law Med Ethics. 1997;25:256-72. [PMID: 11066508]
33. Siegler M. Sounding Boards. Confidentiality in medicine-a decrepit concept. N Engl J Med. 1982;307:1518-21. [PMID: 7144818]
34. Guazzo E. Patient privacy in the computer age: almost a laughing matter [Letter]. Geriatrics. 1997;52:25. [PMID: 9119235]
35. Dodek DY, Dodek A. From Hippocrates to facsimile. Protecting patient confidentiality is more difficult and more important than ever before. CMAJ. 1997;156:847-52. [PMID: 9084393]
36. Ubel PA, Zell MM, Miller DJ, Fischer GS, Peters-Stefani D, Arnold RM. Elevator talk: observational study of inappropriate comments in a public space. Am J Med. 1995;99:190-4. [PMID: 7625424]
37. Murray TH. Genetic exceptionalism and "future diaries": is genetic information different from other medical information? In: Rothstein MA, ed. Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven, CT: Yale Univ Pr; 1997:60-73.
38. Biesecker BB. Psychological issues in cancer genetics. Semin Oncol Nurs. 1997;13:129-34. [PMID: 9114481]
39. Annas GJ, Glantz LH, Roche PA. Drafting the Genetic Privacy Act: science, policy, and practical considerations. J Law Med Ethics. 1995;23:360-6. [PMID: 8715056]
40. Beckwith J, Alper JS. Reconsidering genetic antidiscrimination legislation. J Law Med Ethics. 1998;26:205-10. [PMID: 11066878]
41. Holm S. There is nothing special about genetic information. In: Thompson AK, Chadwick RF, eds. Genetic Information: Acquisition, Access, and Control. New York: Kluwer Academic/Plenum; 1999.
42. Waldholz M. Curing Cancer: The Story of the Men and Women Unlocking the Secrets of Our Deadliest Illness. New York: Simon & Schuster; 1997.
43. Nelkin D, Lindee MS. The DNA Mystique: The Gene as a Cultural Icon. New York: W.H. Freeman; 1995.
44. Markel H. The stigma of disease: implications of genetic screening. Am J Med. 1992;93:209-15. [PMID: 1497018]
45. Kevles DJ. In the Name of Eugenics. Berkeley and Los Angeles, CA: University of California Pr; 1985.
46. Gould SJ. The Mismeasure of Man. New York: W.W. Norton; 1981.
47. Lifton RJ. The Nazi Doctors: Medical Killing and the Psychology of Genocide. New York. Basic Books; 1986.
48. Markel H. Di Goldine Medina (The Golden Land): historical perspectives of eugenics and the east European (Ashkenazi) Jewish-American community, 1880-1925. Health Matrix Clevel. 1997;7:49-64. [PMID: 10167178]
49. Natowicz MR, Alper JK, Alper JS. Genetic discrimination and the law. Am J Hum Genet. 1992;50:465-75. [PMID: 1342778]
50. McEwen JE, McCarty K, Reilly PR. A survey of state insurance commissioners concerning genetic testing and life insurance. Am J Hum Genet. 1992; 51:785-92. [PMID: 1307229]
51. Ostrer H, Allen W, Crandall LA, Moseley RE, Dewar MA, Nye D, et al. Insurance and genetic testing: where are we now? Am J Hum Genet. 1993;52: 565-77. [PMID: 8447322]
52. Gostin L. Genetic discrimination: the use of genetically based diagnostic and prognostic tests by employers and insurers. Am J Law Med. 1991;17:109-44. [PMID: 1831594]
53. Rothstein MA. Genetic discrimination in employment and the Americans with Disabilities Act. Houst Law Rev. 1992;29:23-84. [PMID: 11656667]
54. Wertz DC. Society and the not-so-new genetics: what are we afraid of? Some future predictions from a social scientist. J Contemp Health Law Policy. 1997; 13:299-345. [PMID: 9212521]
55. Billings PR, Kohn MA, de Cuevas M, Beckwith J, Alper JS, Natowicz MR. Discrimination as a consequence of genetic testing. Am J Hum Genet. 1992;50: 476-82. [PMID: 1539589]
56. Hudson KL, Rothenberg KH, Andrews LB, Kahn MJ, Collins FS. Genetic discrimination and health insurance: an urgent need for reform. Science. 1995; 270:391-3. [PMID: 7569991]
57. Geller LN, Alper JS, Billings PR, Barash CI, Beckwith J, Natowicz MR. Individual, family, and societal dimensions of genetic discrimination: a case study analysis. Sci Eng Ethics. 1996;2:71-88. [PMID: 11657787]
58. Hall MA, Rich SS. Laws restricting health insurers' use of genetic information: impact on genetic discrimination. Am J Hum Genet. 2000;66:293-307. [PMID: 10631158]
59. Rothenberg KH. Genetic information and health insurance: state legislative approaches. J Law Med Ethics. 1995;23:312-9. [PMID: 8715051]
60. Rothenberg K, Fuller B, Rothstein M, Duster T, Ellis Kahn MJ, Cunningham R, et al. Genetic information and the workplace: legislative approaches and policy challenges. Science. 1997;275:1755-7. [PMID: 9122681]
61. Bolger A. Insurers win backing on genetic test for risk of hereditary illness. The Financial Times (London). 13 October 2000:2.
62. Enhancing the Oversight of Genetic Tests: Recommendations of the SACGT. Secretary's Advisory Committee on Genetic Testing. Bethesda: National Institutes of Health; 2000:20.
63. Pokorski RJ. Principles of insurance and risk classification. The potential role of genetic testing in risk classification. In: Report of the Genetic Testing Committee to the Medical Section of the American Council of Life Insurance. Hilton Head, SC: American Council of Life Insurance; 1989:45-7.
64. Alonzo AA, Reynolds NR. Stigma, HIV and AIDS: an exploration and elaboration of a stigma trajectory. Soc Sci Med. 1995;41:303-15. [PMID: 7481925]
65. Lo B, Steinbrook RL, Cooke M, Coates TJ, Walters EJ, Hulley SB. Voluntary screening for human immunodeficiency virus (HIV) infection. Weighing the benefits and harms. Ann Intern Med. 1989; 110:727-33. [PMID: 2648929]
66. Sontag S. Illness as Metaphor. New York: Vintage Books; 1977.
67. Lerman C, Croyle R. Psychological issues in genetic testing for breast cancer susceptibility. Arch Intern Med. 1994;154:609-16. [PMID: 8129493]
68. Kash KM, Holland JC, Halper MS, Miller DG. Psychological distress and surveillance behaviors of women with a family history of breast cancer. J Natl Cancer Inst. 1992;84:24-30. [PMID: 1738170]
69. Lerman C, Kash K, Stefanek M. Younger women at increased risk for breast cancer: perceived risk, psychological well-being, and surveillance behavior. J Natl Cancer Inst Monogr. 1994;(16):171-6. [PMID: 7999461]
70. Meissen GJ, Myers RH, Mastromauro CA, Koroshetz WJ, Klinger KW, Farrer LA, et al. Predictive testing for Huntington's disease with use of a linked DNA marker. N Engl J Med. 1988;318:535-42. [PMID: 2893260]
71. Brandt J, Quaid KA, Folstein SE, Garber P, Maestri NE, Abbott MH, et al. Presymptomatic diagnosis of delayed-onset disease with linked DNA markers. The experience in Huntington's disease. JAMA. 1989;261:3108-14. [PMID: 2523979]
72. Wiggins S, Whyte P, Huggins M, Adam S, Theilmann J, Bloch M, et al. The psychological consequences of predictive testing for Huntington's disease. Canadian Collaborative Study of Predictive Testing. N Engl J Med. 1992;327: 1401-5. [PMID: 1406858]
73. Codori AM, Brandt J. Psychological costs and benefits of predictive testing for Huntington's disease. Am J Med Genet. 1994;54:174-84. [PMID: 7810575]
74. Chesney MA, Folkman S. Psychological impact of HIV disease and implications for intervention. Psychiatr Clin North Am. 1994;17:163-82. [PMID: 8190663]
75. Johnston ME, Gibson ES, Terry CW, Haynes RB, Taylor DW, Gafni A, et al. Effects of labelling on income, work and social function among hypertensive employees. J Chronic Dis. 1984;37:417-23. [PMID: 6725496]
76. Haynes RB, Sackett DL, Taylor DW, Gibson ES, Johnson AL. Increased absenteeism from work after detection and labeling of hypertensive patients. N Engl J Med. 1978;299:741-4. [PMID: 692548]
77. Mossey JM. Psychosocial consequences of labelling in hypertension. Clin Invest Med. 1981;4:201-7. [PMID: 7337992]
78. Macdonald LA, Sackett DL, Haynes RB, Taylor DW. Labelling in hypertension: a review of the behavioural and psychological consequences. J Chronic Dis. 1984;37:933-42. [PMID: 6396317]
79. Bloom JR, Monterossa S. Hypertension labeling and sense of well-being. Am J Public Health. 1981;71:1228-32. [PMID: 7294265]
80. Allen GE. The social and economic origins of genetic determinism: a case history of the American Eugenics Movement, 1900-1940 and its lessons for today. Genetica. 1997;99:77-88. [PMID: 9463076]
81. Keller EF. Nature, nurture, and the human genome project. In: Kevles DJ, Hood L, eds. The Code of Codes. Cambridge, MA: Harvard Univ Pr; 1992:281-99.
82. Geller G, Tambor ES, Chase GA, Hofman KJ, Faden RR, Holtzman NA. Incorporation of genetics in primary care practice. Will physicians do the counseling and will they be directive? Arch Fam Med. 1993;2:1119-25. [PMID: 8124486]
83. Hofman KJ, Tambor ES, Chase GA, Geller G, Faden RR, Holtzman NA. Physicians' knowledge of genetics and genetic tests. Acad Med. 1993;68:625-32. [PMID: 8352875]
84. Elsas LJ 2nd, Trepanier A. Cancer genetics in primary care. When is genetic screening an option and when is it the standard of care? Postgrad Med. 2000; 107:191-4, 197-200, 205-8. [PMID: 10778420]