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Predictive Genetic Testing

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Informed Consent in Predictive Genetic Testing

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Abstract

The second chapter gives an introduction to and analysis of predictive genetic testing (PGT) . This chapter explains PGT to identify the distinguishing characteristics of PGT that shape the revised model of consent in future chapters.

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Notes

  1. 1.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1342; Michael J. Green and Jeffrey R. Botkin, “‘Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 571.

  2. 2.

    James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1053.

  3. 3.

    Philip Mitchell, Bettina Meiser, Alex Wilde, et al., “Predictive and Diagnostic Genetic Testing in Psychiatry,” 227–228.

  4. 4.

    Philip Mitchell, Bettina Meiser, Alex Wilde, et al., “Predictive and Diagnostic Genetic Testing in Psychiatry,” 227–228.

  5. 5.

    Philip Mitchell, Bettina Meiser, Alex Wilde, et al., “Predictive and Diagnostic Genetic Testing in Psychiatry,” 227–228.

  6. 6.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1346–1347.

  7. 7.

    Michael J. Green and Jeffrey R. Botkin, “‘Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 571.

  8. 8.

    Abigail L. Rose, Nikki Peters, Judy A. Shea, et al., “Attitudes and Misconceptions about Predictive Genetic Testing for Cancer Risk,” 146.

  9. 9.

    Peter Kraft, Ph.D. and David Hunter, “Genetic Risk Prediction—Are We There Yet?” 1701.

  10. 10.

    Pauline C. Ng, Sarah S. Murray, Samuel Levy, et al., “An Agenda for Personalized Medicine,” 724–725.

  11. 11.

    Chris Berdik, “Genetic Tests Give Consumers Hints About Disease Risk; Critics Have Misgivings,” 2.

  12. 12.

    Francis Collins, The Language of Life, xxi–xxii.

  13. 13.

    Abigail L. Rose, Nikki Peters, Judy A. Shea, et al., “Attitudes and Misconceptions about Predictive Genetic Testing for Cancer Risk,” 146.

  14. 14.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1346, 1385.

  15. 15.

    Chris Berdik, “Genetic Tests Give Consumers Hints About Disease Risk; Critics Have Misgivings,” 2; Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 301.

  16. 16.

    Abigail L. Rose, Nikki Peters, and Judy A. Shea, et al., “Attitudes and Misconceptions about Predictive Genetic Testing for Cancer Risk,” 145.

  17. 17.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1385.

  18. 18.

    Susan M. Cox, “Stories in Decisions: How At-Risk Individuals Decide to Request Predictive Testing for Huntington Disease,” 258.

  19. 19.

    Kathryn Holt, “What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Status and Predictive Genetic Testing,” 254–255.

  20. 20.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1347–1348.

  21. 21.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1347–1348.

  22. 22.

    Susan Wolf and Jeffrey Kahn, “Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy,” 8; Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1347–1348.

  23. 23.

    Heidi Chial, “Mendelian Genetics: Patterns of Inheritance and Single-Gene Disorders;” Susan Wolf and Jeffrey Kahn, “Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy,” 8.

  24. 24.

    James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1054.

  25. 25.

    James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1054–1055.

  26. 26.

    James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1054–1055.

  27. 27.

    Clara L. Gaff, Veronica Collins, Tiffany Symes, et al., “Facilitating Family Communication about Predictive Genetic Testing: Probans’ Perceptions,” 133.

  28. 28.

    James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1052.

  29. 29.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 269–70.

  30. 30.

    Susan Wolf and Jeffrey Kahn, “Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy,” 8.

  31. 31.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 269–70.

  32. 32.

    Shoshana Shiloh and Shiri Ilan, “To Test or Not To Test? Moderators of the Relationship Between Risk Perceptions and Interest in Predictive Genetic Testing,” 471.

  33. 33.

    Shoshana Shiloh and Shiri Ilan, “To Test or Not To Test? Moderators of the Relationship Between Risk Perceptions and Interest in Predictive Genetic Testing,” 471–472, 476–477.

  34. 34.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 269–70.

  35. 35.

    Abigail L. Rose, Nikki Peters, Judy A. Shea, et al., “Attitudes and Misconceptions about Predictive Genetic Testing for Cancer Risk,” 148.

  36. 36.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1385.

  37. 37.

    Abigail L. Rose, Nikki Peters, Judy A. Shea, et al., “Attitudes and Misconceptions about Predictive Genetic Testing for Cancer Risk,” 148.

  38. 38.

    Shoshana Shiloh and Shiri Ilan, “To Test or Not To Test? Moderators of the Relationship Between Risk Perceptions and Interest in Predictive Genetic Testing,” 469.

  39. 39.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 270.

  40. 40.

    Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 107.

  41. 41.

    Marion Harris, Ingrid Winship, Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 304–305.

  42. 42.

    Marion Harris, Ingrid Winship, Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 304–305.

  43. 43.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1349.

  44. 44.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1349.

  45. 45.

    Marion Harris, Ingrid Winship, Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 305; Cynthia Marietta and Amy McGuire, “Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?” 370.

  46. 46.

    Susan Wolf and Jeffrey Kahn, “Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy,” 11.

  47. 47.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 270.

  48. 48.

    Marita Broadstock, Susan Michie, Theresa Marteau, “Psychological Consequences of Predictive Genetic Testing: A Systematic Review,” 735–736.

  49. 49.

    Marita Broadstock, Susan Michie, Theresa Marteau, “Psychological Consequences of Predictive Genetic Testing: A Systematic Review,” 735–736.

  50. 50.

    S. Michie, M. Bobrow, and T. M. Marteau, on behalf of the FAP Collaborative Research Group, “Predictive Genetic Testing in Children and Adults: A Study of Emotional Impact,” 520, 526.

  51. 51.

    Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 70.

  52. 52.

    S. Michie, M. Bobrow, and T. M. Marteau, on behalf of the FAP Collaborative Research Group, “Predictive Genetic Testing in Children and Adults: A Study of Emotional Impact,” 526.

  53. 53.

    Chris Berdik, “Genetic Tests Give Consumers Hints About Disease Risk; Critics Have Misgivings,” Special, 1.

  54. 54.

    Maxwell Mehlman, “Predictive Genetic Testing in Urology: Ethical and Social Issues,” 433.

  55. 55.

    Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 144.

  56. 56.

    AMA, “Direct-to-Consumer Genetic Testing;” Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 66.

  57. 57.

    Cynthia Marietta, Amy McGuire, “Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?” 370; Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 269.

  58. 58.

    AMA, “Direct-to-Consumer Genetic Testing;” Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 66–67.

  59. 59.

    Cynthia Marietta and Amy McGuire, “Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?” 370.

  60. 60.

    AMA, “Direct-to-Consumer Genetic Testing;” Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 268.

  61. 61.

    Cynthia Marietta and Amy McGuire, “Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?” 370.

  62. 62.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 302.

  63. 63.

    Janice Berliner and Angela Fay, “Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer: Recommendations of the National Society of Genetic Counselors,” 256.

  64. 64.

    AMA, “Direct-to-Consumer Genetic Testing;” Cynthia Marietta and Amy McGuire, “Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?” 370.

  65. 65.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 268.

  66. 66.

    Jon Emery, Kristine Barlow-Stewart, and Sylvia A. Metcalfe, “There’s Cancer in the Family,” 194.

  67. 67.

    Abigail L. Rose, Nikki Peters, Judy A. Shea, et al., “Attitudes and Misconceptions about Predictive Genetic Testing for Cancer Risk,” 145–146.

  68. 68.

    Jon Emery, Kristine Barlow-Stewart, and Sylvia A. Metcalfe, “There’s Cancer in the Family,” 194, 196–197.

  69. 69.

    Abigail L. Rose, Nikki Peters, Judy A. Shea, et al., “Attitudes and Misconceptions about Predictive Genetic Testing for Cancer Risk,” 149.

  70. 70.

    James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1053.

  71. 71.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,”434.

  72. 72.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 430–433.

  73. 73.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 433.

  74. 74.

    Susan Michie, John Weinman, Julie Miller, et al., “Predictive Genetic Testing: High Risk Expectations in the Face of Low Risk Information,” 36, 46; Maxwell Mehlman, “Predictive Genetic Testing in Urology: Ethical and Social Issues,” 433.

  75. 75.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 435.

  76. 76.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 435.

  77. 77.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 436.

  78. 78.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 437.

  79. 79.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 437.

  80. 80.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 437.

  81. 81.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 438.

  82. 82.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 438.

  83. 83.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 361–362.

  84. 84.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 438.

  85. 85.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 437–439.

  86. 86.

    Susan Michie, John Weinman, Julie Miller, et al., “Predictive Genetic Testing: High Risk Expectations in the Face of Low Risk Information,” 36.

  87. 87.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 440.

  88. 88.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 440.

  89. 89.

    Klitzman, Robert, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 439–441.

  90. 90.

    Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 106.

  91. 91.

    Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 106.

  92. 92.

    Maxwell Mehlman, “Predictive Genetic Testing in Urology: Ethical and Social Issues,” 433.

  93. 93.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 381.

  94. 94.

    Patricia Kelly, “Cancer Risks in Perspective: Information and Approaches for Clinicians,” 387.

  95. 95.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 431.

  96. 96.

    Janet Dolgin and Lois Shepherd, Bioethics and the Law, 56.

  97. 97.

    Neil F. Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 131.

  98. 98.

    Lewis Vaughn, Bioethics: Principles, Issues, and Cases, 146; Janet Dolgin and Lois Shepherd, Bioethics and the Law, 55, 59; Bernard Lo, Resolving Ethical Dilemmas, 22.

  99. 99.

    Bernard Lo, Resolving Ethical Dilemmas, 22.

  100. 100.

    Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 82.

  101. 101.

    Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 11.

  102. 102.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1348.

  103. 103.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 301.

  104. 104.

    Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 106.

  105. 105.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 301.

  106. 106.

    Angela Trepanier, Mary Ahrens, Wendy McKinnon, et al., “Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors,” 107.

  107. 107.

    Janice Berliner and Angela Fay, “Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer: Recommendations of the National Society of Genetic Counselors,” 255.

  108. 108.

    Janice Berliner and Angela Fay, “Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer: Recommendations of the National Society of Genetic Counselors,” 252–256.

  109. 109.

    Shoshana Shiloh and Shiri Ilan, “To Test or Not To Test? Moderators of the Relationship Between Risk Perceptions and Interest in Predictive Genetic Testing,” 467.

  110. 110.

    Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 64.

  111. 111.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1357.

  112. 112.

    Abigail L. Rose, Nikki Peters, Judy A. Shea, et al., “Attitudes and Misconceptions about Predictive Genetic Testing for Cancer Risk,” 146.

  113. 113.

    Anita Silvers and Michael Ashley Stein. “An Equality Paradigm for Preventing Genetic Discrimination,” 1347.

  114. 114.

    Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 69.

  115. 115.

    Regina Ensenauer M.D., Virginia Michels M.D., and Shanda Reinke M.S., “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 63; Bert Heinrichs, “What Should We Want to Know About Our Future? A Kantian View on Predictive Genetic Testing. Medicine,” 29; Michael Burgess PhD, Claude Lanberg, MD, PhD, and Bartha Maria Knoppers, LLD, “Bioethics for Clinicians: 14. Ethics and Genetics in Medicine,” 1309; Brita Arver, Aina Haegermark, Ulla Platten, et al., “Evaluation of Psychosocial Effects of Pre-Symptomatic Testing for Breast/Ovarian and Colon Cancer Pre-Disposing Genes: a 12-Month Follow-Up,” 109.

  116. 116.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1351.

  117. 117.

    Susan Wolf and Jeffrey Kahn, “Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy,” 9.

  118. 118.

    Kathryn Holt, “What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Status and Predictive Genetic Testing,” 254–255.

  119. 119.

    Clara L. Gaff, Veronica Collins, Tiffany Symes, et al., “Facilitating Family Communication about Predictive Genetic Testing: Probans’ Perceptions,” 134.

  120. 120.

    Kathryn Holt, “What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Status and Predictive Genetic Testing,” 255.

  121. 121.

    Kathryn Holt, “What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Status and Predictive Genetic Testing,” 255.

  122. 122.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 301; Maxwell Mehlman, “Predictive Genetic Testing in Urology: Ethical and Social Issues,” 435; James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1053.

  123. 123.

    Maxwell Mehlman, “Predictive Genetic Testing in Urology: Ethical and Social Issues,” 435.

  124. 124.

    James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1053.

  125. 125.

    Clara L. Gaff, Veronica Collins, Tiffany Symes, et al., “Facilitating Family Communication about Predictive Genetic Testing: Probans’ Perceptions,” 134, 137.

  126. 126.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 301–302; James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1053.

  127. 127.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 301; Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 69.

  128. 128.

    Janet Dolgin and Lois Shepherd, Bioethics and the Law, 69.

  129. 129.

    Linda Farber Post, Jeffrey Blustein, and Nancy Neveloff Dubler, Handbook for Health Care Ethics Committees, 42–43; Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 302–303.

  130. 130.

    The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure, “ASHG Statement: Professional Disclosure of Familial Genetic Information,” 474.

  131. 131.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 303.

  132. 132.

    Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 70.

  133. 133.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 303–304.

  134. 134.

    Elizabeth Chapman, “Ethical Dilemmas in Testing for Late Onset Conditions: Reactions to Testing and Perceived Impact on Other Family Members,” 351; Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 134; Michael J. Green and Jeffrey R. Botkin, “Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 572.

  135. 135.

    Michael J. Green and Jeffrey R. Botkin, “‘Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 571–573.

  136. 136.

    Leon Kass, Life, Liberty and the Defense of Dignity, 57, 126.

  137. 137.

    Michael J. Green and Jeffrey R. Botkin, “‘Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 572.

  138. 138.

    Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 136.

  139. 139.

    Michael J. Green and Jeffrey R. Botkin, “‘Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 573.

  140. 140.

    Michael J. Green and Jeffrey R. Botkin, “‘Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 571–573.

  141. 141.

    Barry S Coller, “The Physician-Scientist, the State, and the Oath: Thoughts for our Times,” 2567.

  142. 142.

    Michael J. Green and Jeffrey R. Botkin, “‘Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 573.

  143. 143.

    Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 144.

  144. 144.

    Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 107.

  145. 145.

    Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 107.

  146. 146.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1347–1348, 1385; Susan Wolf and Jeffrey Kahn, “Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy,” 8.

  147. 147.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1346; James Evans, Cecile Skrzynia, and Wylie Burke, “The Complexities of Predictive Genetic Testing,” 1053.

  148. 148.

    Shoshana Shiloh and Shiri Ilan, “To Test or Not To Test? Moderators of the Relationship Between Risk Perceptions and Interest in Predictive Genetic Testing,” 469; Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 269–270; Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 107.

  149. 149.

    Chris Berdik, “Genetic Tests Give Consumers Hints About Disease Risk; Critics Have Misgivings,” Special; Maxwell Mehlman, “Predictive Genetic Testing in Urology: Ethical and Social Issues,” 433.

  150. 150.

    AMA, “Direct-to-Consumer Genetic Testing;” Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 66.

  151. 151.

    AMA, “Direct-to-Consumer Genetic Testing;” Cynthia Marietta and Amy McGuire, “Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?” 370.

  152. 152.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 302.

  153. 153.

    Cynthia Marietta and Amy McGuire, “Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?” 370.

  154. 154.

    AMA, “Direct-to-Consumer Genetic Testing;” Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 67.

  155. 155.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 433–434.

  156. 156.

    Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 106; Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 381.

  157. 157.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 434.

  158. 158.

    Neil F. Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 131.

  159. 159.

    Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 11.

  160. 160.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1348; Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 301.

  161. 161.

    Janice Berliner and Angela Fay, “Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer: Recommendations of the National Society of Genetic Counselors,” 252–255.

  162. 162.

    Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1357; Abigail L. Rose, Nikki Peters, Judy A. Shea, et al., “Attitudes and Misconceptions about Predictive Genetic Testing for Cancer Risk,” 146.

  163. 163.

    Kathryn Holt, “What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Status and Predictive Genetic Testing,” 254.

  164. 164.

    Maxwell Mehlman, “Predictive Genetic Testing in Urology: Ethical and Social Issues,” 435; Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 302.

  165. 165.

    Clara L. Gaff, Veronica Collins, Tiffany Symes, et al., “Facilitating Family Communication about Predictive Genetic Testing: Probans’ Perceptions,” 134.

  166. 166.

    Marion Harris, Ingrid Winship, and Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 302–303.

  167. 167.

    Leon Kass, Life, Liberty and the Defense of Dignity, 57; Michael J. Green and Jeffrey R. Botkin, “‘Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 571–572.

  168. 168.

    Michael J. Green and Jeffrey R. Botkin, “‘Genetic Exceptionalism” in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests,” 571–573; Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 136.

  169. 169.

    Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 107.

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    Jessica Minor

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Minor, J. (2015). Predictive Genetic Testing. In: Informed Consent in Predictive Genetic Testing. Springer, Cham. https://doi.org/10.1007/978-3-319-17416-7_2

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