Genetic exceptionalism vs. paradigm shift: Lessons from HIV

Journal of Law, Medicine and Ethics

Volumn 29, Issue 2, 2001, Pages 141-148

  Ross, Lainie Friedman ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ANALYTICAL APPROACH; ARTICLE; COMPARATIVE STUDY; CONFIDENTIALITY; EDUCATION; GENETIC COUNSELING; GENETIC PRIVACY; GENETIC SCREENING; GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH; HEALTH CARE POLICY; HUMAN; INFORMATION SERVICE; MEDICAL ETHICS; MEDICAL GENETICS; PROFESSIONAL PATIENT RELATIONSHIP; SERODIAGNOSIS; SOCIAL PSYCHOLOGY; STANDARD; UNITED STATES;

ANALYTICAL APPROACH; GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH; PROFESSIONAL PATIENT RELATIONSHIP;

AIDS SERODIAGNOSIS; CONFIDENTIALITY; ETHICS, MEDICAL; GENETIC COUNSELING; GENETIC PRIVACY; GENETIC SCREENING; GENETICS, MEDICAL; HEALTH POLICY; HUMANS; INFORMATION SERVICES; PREJUDICE; STEREOTYPING; UNITED STATES;

EID: 0035375931     PISSN: 10731105     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1748-720x.2001.tb00333.x     Document Type: Review

References (101)

1. R. Bayer, "Public Health Policy and the AIDS Epidemic: An End to HIV Exceptionalism?," N. Engl. J. Med., 324 (1991): 1500-04.
2. Id. See also R. Bayer, C. Levine, and S.M. Wolf, "HIV Antibody Screening: An Ethical Framework for Evaluating Proposed Programs," JAMA, 256 (1986): 1768-74; K.M. De Cock and A.M. Johnson, "From Exceptionalism to Normalization: A Reappraisal of Attitudes and Practices Around HIV Testing," British Medical Journal, 316 (1998): 290-93; R. Rosenbrock et al. "The Normalization of AIDS in Western European Countries," Social Science and Medicine, 50 (2000): 1607-29.
3. Id. See also R. Bayer, C. Levine, and S.M. Wolf, "HIV Antibody Screening: An Ethical Framework for Evaluating Proposed Programs," JAMA, 256 (1986): 1768-74; K.M. De Cock and A.M. Johnson, "From Exceptionalism to Normalization: A Reappraisal of Attitudes and Practices Around HIV Testing," British Medical Journal, 316 (1998): 290-93; R. Rosenbrock et al. "The Normalization of AIDS in Western European Countries," Social Science and Medicine, 50 (2000): 1607-29.
4. Id. See also R. Bayer, C. Levine, and S.M. Wolf, "HIV Antibody Screening: An Ethical Framework for Evaluating Proposed Programs," JAMA, 256 (1986): 1768-74; K.M. De Cock and A.M. Johnson, "From Exceptionalism to Normalization: A Reappraisal of Attitudes and Practices Around HIV Testing," British Medical Journal, 316 (1998): 290-93; R. Rosenbrock et al. "The Normalization of AIDS in Western European Countries," Social Science and Medicine, 50 (2000): 1607-29.
5. Id. See also R. Bayer, C. Levine, and S.M. Wolf, "HIV Antibody Screening: An Ethical Framework for Evaluating Proposed Programs," JAMA, 256 (1986): 1768-74; K.M. De Cock and A.M. Johnson, "From Exceptionalism to Normalization: A Reappraisal of Attitudes and Practices Around HIV Testing," British Medical Journal, 316 (1998): 290-93; R. Rosenbrock et al. "The Normalization of AIDS in Western European Countries," Social Science and Medicine, 50 (2000): 1607-29.
6. The risks and benefits of anonymous testing are discussed in a variety of contexts. See, for example, N. Hunter, "AIDS Prevention and Civil Liberties: The False Security of Mandatory Testing," SIECUS Report, 16 (1987): 1-9; Centers for Disease Control, "Additional Recommendations to Reduce Sexual and Drug Abuse-Related Transmission of Human T-Lymphotropic Virus Type III/Lymphadenopathy-Associated Virus," Morbidity and Mortality Weekly Report, 35 (1986): 152-55; Centers for Disease Control, "Cooperative Agreements for Human Immunodeficiency Virus (HIV): Prevention Projects Program Announcement and Availability of Funds for Fiscal Year 1993," 57 Fed. Reg. 40, 675-40,682 (1992).
7. The risks and benefits of anonymous testing are discussed in a variety of contexts. See, for example, N. Hunter, "AIDS Prevention and Civil Liberties: The False Security of Mandatory Testing," SIECUS Report, 16 (1987): 1-9; Centers for Disease Control, "Additional Recommendations to Reduce Sexual and Drug Abuse-Related Transmission of Human T-Lymphotropic Virus Type III/Lymphadenopathy-Associated Virus," Morbidity and Mortality Weekly Report, 35 (1986): 152-55; Centers for Disease Control, "Cooperative Agreements for Human Immunodeficiency Virus (HIV): Prevention Projects Program Announcement and Availability of Funds for Fiscal Year 1993," 57 Fed. Reg. 40, 675-40,682 (1992).
8. The risks and benefits of anonymous testing are discussed in a variety of contexts. See, for example, N. Hunter, "AIDS Prevention and Civil Liberties: The False Security of Mandatory Testing," SIECUS Report, 16 (1987): 1-9; Centers for Disease Control, "Additional Recommendations to Reduce Sexual and Drug Abuse-Related Transmission of Human T-Lymphotropic Virus Type III/Lymphadenopathy-Associated Virus," Morbidity and Mortality Weekly Report, 35 (1986): 152-55; Centers for Disease Control, "Cooperative Agreements for Human Immunodeficiency Virus (HIV): Prevention Projects Program Announcement and Availability of Funds for Fiscal Year 1993," 57 Fed. Reg. 40, 675-40,682 (1992).
9. L.B. Andrews et al., eds., Assessing Genetic Risks: Implications for Health and Social Policy (Washington, D.C.: National Academy Press, 1994); M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997).
10. L.B. Andrews et al., eds., Assessing Genetic Risks: Implications for Health and Social Policy (Washington, D.C.: National Academy Press, 1994); M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997).
11. T.H. Murray, "Genetic Exceptionalism and 'Future Diaries': Is Genetic Information Different from Other Medical Information?," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 60-73.
12. Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 5701, 110 Stat. 1936 (1996) (codified at 29 U.S.C.A. 1181 (Supp. 1998)).
13. G.J. Annas, L.H. Glantz, and P.A. Roche, Genetic Privacy Act 2(a)(8) (1995). For a discussion of state legislation, see W.F. Mulholland II and A.S. Jaeger, "Comment: Genetic Privacy and Discrimination: A Survey of State Legislation," Jurimetrics, 39 (1999): 317-26. For a discussion of federal legislation initiatives, including the Genetic Information Nondiscrimination in Health Insurance Act (GINHIA) of 1999, see M.A. Rothstein and S. Hoffman, "Genetic Testing, Genetic Medicine, and Managed Care," Wake Forest Law Review, 34 (1999): 849-88, at 871. For a discussion of state and federal law protections, see T.L. Rachinsky, "Comment: Genetic Testing: Toward a Comprehensive Policy to Prevent Genetic Discrimination in the Workplace," University of Pennsylvania Journal of Labor and Employment Law, 2 (2000): 575-98, at 585-98.
14. G.J. Annas, L.H. Glantz, and P.A. Roche, Genetic Privacy Act 2(a)(8) (1995). For a discussion of state legislation, see W.F. Mulholland II and A.S. Jaeger, "Comment: Genetic Privacy and Discrimination: A Survey of State Legislation," Jurimetrics, 39 (1999): 317-26. For a discussion of federal legislation initiatives, including the Genetic Information Nondiscrimination in Health Insurance Act (GINHIA) of 1999, see M.A. Rothstein and S. Hoffman, "Genetic Testing, Genetic Medicine, and Managed Care," Wake Forest Law Review, 34 (1999): 849-88, at 871. For a discussion of state and federal law protections, see T.L. Rachinsky, "Comment: Genetic Testing: Toward a Comprehensive Policy to Prevent Genetic Discrimination in the Workplace," University of Pennsylvania Journal of Labor and Employment Law, 2 (2000): 575-98, at 585-98.
15. G.J. Annas, L.H. Glantz, and P.A. Roche, Genetic Privacy Act 2(a)(8) (1995). For a discussion of state legislation, see W.F. Mulholland II and A.S. Jaeger, "Comment: Genetic Privacy and Discrimination: A Survey of State Legislation," Jurimetrics, 39 (1999): 317-26. For a discussion of federal legislation initiatives, including the Genetic Information Nondiscrimination in Health Insurance Act (GINHIA) of 1999, see M.A. Rothstein and S. Hoffman, "Genetic Testing, Genetic Medicine, and Managed Care," Wake Forest Law Review, 34 (1999): 849-88, at 871. For a discussion of state and federal law protections, see T.L. Rachinsky, "Comment: Genetic Testing: Toward a Comprehensive Policy to Prevent Genetic Discrimination in the Workplace," University of Pennsylvania Journal of Labor and Employment Law, 2 (2000): 575-98, at 585-98.
16. R. Bayer, "Clinical Progress and the Future of HIV Exceptionalism," Archives of Internal Medicine, 159 (1999):1042-48, at 1042.
17. Id. at 1042.
18. Rosenbrock et al., supra note 2; Bayer, supra note 8.
19. Bayer, supra note 8, at 1042.
20. S. Burris, "Pubic Health, 'AIDS Exceptionalism' and the Law" John Marshall Law Review, 27 (1994): 251-72.
21. Id. at 272.
22. D. Nelkin and M.S. Lindee (contributor), The DNA Mystique: The Gene As a Cultural Icon (New York: W.H. Freeman & Co., 1995): at 198.
23. Wilson and Jungner enumerated the criteria that are necessary to justify a screening program. They include the existence of a cheap accurate test for a condition for which early intervention is successful and critical. PKU, hemoglobinopathies, and CAH fulfill their criteria. J.M.G. Wilson and F. Jungner, "Principles and Practice of Screening for Disease," Public Health Papers, no. 34 (Geneva: World Health Organization, 1968).
24. American Academy of Pediatrics, Committee on Genetics, "Newborn Screening Fact Sheets," Pediatrics, 98 (1996): 473-501, at 474.
25. See T.H. Murray and A.L. Caplan, eds., Which Babies Shall Live? Humanistic Dimensions of the Care of Imperiled Newborns (Clifton, New Jersey: Humana Press, 1985); H. Kuhse and P. Singer, Should the Baby Live? The Problems of Handicapped Infants (New York: Oxford University Press, 1985); A.L. Caplan, R.H. Blank, and J.C. Merrick, eds., Compelled Compassion: Government Intervention in the Treatment of Critically Ill Newborns (Totowa, New Jersey: Humana Press, 1992); A. Goldworth et al., eds., Ethics and Perinatology (New York: Oxford University Press, 1995).
26. See T.H. Murray and A.L. Caplan, eds., Which Babies Shall Live? Humanistic Dimensions of the Care of Imperiled Newborns (Clifton, New Jersey: Humana Press, 1985); H. Kuhse and P. Singer, Should the Baby Live? The Problems of Handicapped Infants (New York: Oxford University Press, 1985); A.L. Caplan, R.H. Blank, and J.C. Merrick, eds., Compelled Compassion: Government Intervention in the Treatment of Critically Ill Newborns (Totowa, New Jersey: Humana Press, 1992); A. Goldworth et al., eds., Ethics and Perinatology (New York: Oxford University Press, 1995).
27. See T.H. Murray and A.L. Caplan, eds., Which Babies Shall Live? Humanistic Dimensions of the Care of Imperiled Newborns (Clifton, New Jersey: Humana Press, 1985); H. Kuhse and P. Singer, Should the Baby Live? The Problems of Handicapped Infants (New York: Oxford University Press, 1985); A.L. Caplan, R.H. Blank, and J.C. Merrick, eds., Compelled Compassion: Government Intervention in the Treatment of Critically Ill Newborns (Totowa, New Jersey: Humana Press, 1992); A. Goldworth et al., eds., Ethics and Perinatology (New York: Oxford University Press, 1995).
28. See T.H. Murray and A.L. Caplan, eds., Which Babies Shall Live? Humanistic Dimensions of the Care of Imperiled Newborns (Clifton, New Jersey: Humana Press, 1985); H. Kuhse and P. Singer, Should the Baby Live? The Problems of Handicapped Infants (New York: Oxford University Press, 1985); A.L. Caplan, R.H. Blank, and J.C. Merrick, eds., Compelled Compassion: Government Intervention in the Treatment of Critically Ill Newborns (Totowa, New Jersey: Humana Press, 1992); A. Goldworth et al., eds., Ethics and Perinatology (New York: Oxford University Press, 1995).
29. In 1865, Gregor Mendel, the "father" of genetics, described some fundamental principles of heredity. Mendelian inheritance could be dominant or recessive, depending on whether phenotypic expression requires one or two copies of the abnormal gene. Today, inheritance is understood to be much more complex, including not only single gene disorders, but chromosomal disorders (alteration in the number of chromosomes), mitochondrial disorders (alteration in the genetic material found within the mitochondria as distinct from the nucleus), and multifactorial disorders (disorders that are the product of the interaction of multiple genes and environmental factors). It is also understood that single gene disorders are not as simple as Mendel suggested. For example, the severity and expression of single gene disorders can depend on whether the abnormal gene was inherited from the mother or the father. Modern genetics begins with, but goes beyond, Mendelian genetics. Our rapidly evolving understanding of genetics is particularly relevant to this paper's section on genetic education because what many clinicians learn in medical school is outdated by the time they complete their residencies.
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59. Id. at 62.
60. Id. at 64.
61. Id. at 62.
62. Id. at 62.
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64. Id. at 32-33.
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67. Gostin and Hodge, supra note 37, at 33-34.
68. Id. at 34-35.
69. Id. at 35, citing G. Gugliotta, "Bar Codes for the Body Make It to the Market," The Washington Post, June 21, 1999, at A1.
70. Rothstein, supra note 4.
71. Murray, supra note 5, at 71.
72. Gostin and Hodge, supra note 37, at 23.
73. Rothstein, supra note 4. See also T.F. Murphy and M.A. Lappe, eds., Justice and the Human Genome Project (Berkeley: University of California Press, 1994); A. Etzioni, The Limits of Privacy (New York: Basic Books, 1999).
74. Rothstein, supra note 4. See also T.F. Murphy and M.A. Lappe, eds., Justice and the Human Genome Project (Berkeley: University of California Press, 1994); A. Etzioni, The Limits of Privacy (New York: Basic Books, 1999).
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76. A.R. Chapman, ed., Health Care and Information Ethics: Protecting Fundamental Human Rights (Kansas City: Sheed and Ward, 1997); L.O. Gostin et al., "Privacy and Security of Personal Information in a New Health Care System," JAMA, 270 (1993): 2487-93.
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78. F.M. Giardiello et al., "The Use and Interpretation of Commercial APC Gene Testing for Familial Adenomatous Polyposis," N. Engl. J. Med., 336 (1997): 823-27.
79. See also N.A. Holtzman, "Primary Care Physicians as Providers of Frontline Genetic Services," Fetal Diagnosis & Therapy, 8, no. 1, Supplement (1993): 213-19; K.J. Hofman et al., "Physicians Knowledge of Genetics and Genetic Tests," Academic Medicine, 68 (1993): 625-32;
80. See also N.A. Holtzman, "Primary Care Physicians as Providers of Frontline Genetic Services," Fetal Diagnosis & Therapy, 8, no. 1, Supplement (1993): 213-19; K.J. Hofman et al., "Physicians Knowledge of Genetics and Genetic Tests," Academic Medicine, 68 (1993): 625-32;
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83. N. Touchette et al., Toward the 21st Century: Incorporating Genetics into Primary Health Care (New York: Cold Spring Harbor Laboratory Press, 1997).
84. See the ASHG Report, "Report from the ASHG Information and Education Committee: Medical School Core Curriculum in Genetics," American Journal of Human Genetics, 56 (1995): 535-37; American Society of Clinical Oncology, "Resource Document for Curriculum Development in Cancer Genetics Education," Journal of Clinical Oncology, 15 (1997): 2157-69; "Group Drafts Core Curriculum for 'What Docs Need to Know about Genetics," JAMA, 279 (1998): 735-36.
85. See the ASHG Report, "Report from the ASHG Information and Education Committee: Medical School Core Curriculum in Genetics," American Journal of Human Genetics, 56 (1995): 535-37; American Society of Clinical Oncology, "Resource Document for Curriculum Development in Cancer Genetics Education," Journal of Clinical Oncology, 15 (1997): 2157-69; "Group Drafts Core Curriculum for 'What Docs Need to Know about Genetics," JAMA, 279 (1998): 735-36.
86. See the ASHG Report, "Report from the ASHG Information and Education Committee: Medical School Core Curriculum in Genetics," American Journal of Human Genetics, 56 (1995): 535-37; American Society of Clinical Oncology, "Resource Document for Curriculum Development in Cancer Genetics Education," Journal of Clinical Oncology, 15 (1997): 2157-69; "Group Drafts Core Curriculum for 'What Docs Need to Know about Genetics," JAMA, 279 (1998): 735-36.
87. B.A. Fine, "The Evolution of Nondirectiveness in Genetic Counseling and Implications of the Human Genome Project," in D.M. Bartels, B.S. LeRoy, and A.L. Caplan, eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): at 101-18.
88. S. Michie et al., "Nondirectiveness in Genetic Counseling: An Empirical Study," American Journal of Human Genetics, 60 (1997): 40-47.
89. Fine, supra note 54; Michie, supra note 55. See also A.L. Caplan, "Neutrality Is Not Morality: The Ethics of Genetic Counseling," in D.M. Bartels, B.S. LeRoy, and A.L. Caplan, eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): at 149-165; M. Yarborough, J.A. Scott, and L.K. Dixon, "The Role of Beneficence in Clinical Genetics: Non-Directive Counseling Reconsidered," Theoretical Medicine, 10 (1989): 139-49; R. Wachbroit and D. Wasserman, "Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling," Stanford Law and Policy Review, 6 (1995): 103-11; B.A. Bernhardt, "Empirical Evidence that Genetic Counseling Is Directive: Where Do We Go from Here?,"American Journal of Human Genetics, 60 (1997): 17-20; A. Clarke, "Is Non-Directive Genetic Counseling Possible?," Lancet, 338 (1991): 998; M.T. White, "Making Responsible Decisions: An Interpretative Ethic for Genetic Decisionmaking," Hastings Center Report, 29, no. 1 (1999): 14-21.
90. Fine, supra note 54; Michie, supra note 55. See also A.L. Caplan, "Neutrality Is Not Morality: The Ethics of Genetic Counseling," in D.M. Bartels, B.S. LeRoy, and A.L. Caplan, eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): at 149-165; M. Yarborough, J.A. Scott, and L.K. Dixon, "The Role of Beneficence in Clinical Genetics: Non-Directive Counseling Reconsidered," Theoretical Medicine, 10 (1989): 139-49; R. Wachbroit and D. Wasserman, "Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling," Stanford Law and Policy Review, 6 (1995): 103-11; B.A. Bernhardt, "Empirical Evidence that Genetic Counseling Is Directive: Where Do We Go from Here?,"American Journal of Human Genetics, 60 (1997): 17-20; A. Clarke, "Is Non-Directive Genetic Counseling Possible?," Lancet, 338 (1991): 998; M.T. White, "Making Responsible Decisions: An Interpretative Ethic for Genetic Decisionmaking," Hastings Center Report, 29, no. 1 (1999): 14-21.
91. Fine, supra note 54; Michie, supra note 55. See also A.L. Caplan, "Neutrality Is Not Morality: The Ethics of Genetic Counseling," in D.M. Bartels, B.S. LeRoy, and A.L. Caplan, eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): at 149-165; M. Yarborough, J.A. Scott, and L.K. Dixon, "The Role of Beneficence in Clinical Genetics: Non-Directive Counseling Reconsidered," Theoretical Medicine, 10 (1989): 139-49; R. Wachbroit and D. Wasserman, "Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling," Stanford Law and Policy Review, 6 (1995): 103-11; B.A. Bernhardt, "Empirical Evidence that Genetic Counseling Is Directive: Where Do We Go from Here?,"American Journal of Human Genetics, 60 (1997): 17-20; A. Clarke, "Is Non-Directive Genetic Counseling Possible?," Lancet, 338 (1991): 998; M.T. White, "Making Responsible Decisions: An Interpretative Ethic for Genetic Decisionmaking," Hastings Center Report, 29, no. 1 (1999): 14-21.
92. Fine, supra note 54; Michie, supra note 55. See also A.L. Caplan, "Neutrality Is Not Morality: The Ethics of Genetic Counseling," in D.M. Bartels, B.S. LeRoy, and A.L. Caplan, eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): at 149-165; M. Yarborough, J.A. Scott, and L.K. Dixon, "The Role of Beneficence in Clinical Genetics: Non-Directive Counseling Reconsidered," Theoretical Medicine, 10 (1989): 139-49; R. Wachbroit and D. Wasserman, "Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling," Stanford Law and Policy Review, 6 (1995): 103-11; B.A. Bernhardt, "Empirical Evidence that Genetic Counseling Is Directive: Where Do We Go from Here?,"American Journal of Human Genetics, 60 (1997): 17-20; A. Clarke, "Is Non-Directive Genetic Counseling Possible?," Lancet, 338 (1991): 998; M.T. White, "Making Responsible Decisions: An Interpretative Ethic for Genetic Decisionmaking," Hastings Center Report, 29, no. 1 (1999): 14-21.
93. Fine, supra note 54; Michie, supra note 55. See also A.L. Caplan, "Neutrality Is Not Morality: The Ethics of Genetic Counseling," in D.M. Bartels, B.S. LeRoy, and A.L. Caplan, eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): at 149-165; M. Yarborough, J.A. Scott, and L.K. Dixon, "The Role of Beneficence in Clinical Genetics: Non-Directive Counseling Reconsidered," Theoretical Medicine, 10 (1989): 139-49; R. Wachbroit and D. Wasserman, "Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling," Stanford Law and Policy Review, 6 (1995): 103-11; B.A. Bernhardt, "Empirical Evidence that Genetic Counseling Is Directive: Where Do We Go from Here?,"American Journal of Human Genetics, 60 (1997): 17-20; A. Clarke, "Is Non-Directive Genetic Counseling Possible?," Lancet, 338 (1991): 998; M.T. White, "Making Responsible Decisions: An Interpretative Ethic for Genetic Decisionmaking," Hastings Center Report, 29, no. 1 (1999): 14-21.
94. Fine, supra note 54; Michie, supra note 55. See also A.L. Caplan, "Neutrality Is Not Morality: The Ethics of Genetic Counseling," in D.M. Bartels, B.S. LeRoy, and A.L. Caplan, eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): at 149-165; M. Yarborough, J.A. Scott, and L.K. Dixon, "The Role of Beneficence in Clinical Genetics: Non-Directive Counseling Reconsidered," Theoretical Medicine, 10 (1989): 139-49; R. Wachbroit and D. Wasserman, "Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling," Stanford Law and Policy Review, 6 (1995): 103-11; B.A. Bernhardt, "Empirical Evidence that Genetic Counseling Is Directive: Where Do We Go from Here?,"American Journal of Human Genetics, 60 (1997): 17-20; A. Clarke, "Is Non-Directive Genetic Counseling Possible?," Lancet, 338 (1991): 998; M.T. White, "Making Responsible Decisions: An Interpretative Ethic for Genetic Decisionmaking," Hastings Center Report, 29, no. 1 (1999): 14-21.
95. Clarke, supra note 56, at 998.
96. Touchette, supra note 52. ASHG Report, supra note 53.
97. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavior Research, Making Health Care Decisions, vol. 1 (Washington, D.C.: U.S. Gov't Printing Office, 1982); J. Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984); C. W. Lidz, P.S. Appelbaum, and A. Meisel, "Two Models of Implementing Informed Consent," Archives of Internal Medicine, 148 (1988): 1385-89.
98. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavior Research, Making Health Care Decisions, vol. 1 (Washington, D.C.: U.S. Gov't Printing Office, 1982); J. Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984); C. W. Lidz, P.S. Appelbaum, and A. Meisel, "Two Models of Implementing Informed Consent," Archives of Internal Medicine, 148 (1988): 1385-89.
99. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavior Research, Making Health Care Decisions, vol. 1 (Washington, D.C.: U.S. Gov't Printing Office, 1982); J. Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984); C. W. Lidz, P.S. Appelbaum, and A. Meisel, "Two Models of Implementing Informed Consent," Archives of Internal Medicine, 148 (1988): 1385-89.
100. White, supra note 56. See also G. Geller et al., "Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent" (Consensus Statement), JAMA, 277 (1997): 1467-74.
101. President's Commission, supra note 59; Katz, supra note 59.