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Informed Consent in Predictive Genetic Testing pp 109–163Cite as

Revised Model of Informed Consent

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Abstract

The fourth chapter explains the revised model by aligning the three distinguishing characteristics of PGT with the three widely recognized components in the current model. The practice of the current model of informed consent in matters related to genetics tends to be more of an event, disclosure model. Tom Beauchamp explains that some technologies make it more difficult to encourage growth of both technological and patient rights. The new genetic technologies being developed and implemented today have many implications for informed consent that are not being adequately addressed in the current model.

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Notes

  1. 1.

    Stephen Wear, Informed Consent: Patient Autonomy and Clinician Beneficence within Health Care, 100; Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 69–71; Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 8.

  2. 2.

    Tom L. Beauchamp, “Informed Consent: Its History, Meaning, and Present Challenges,” 519–520.

  3. 3.

    Ulrike Felt, Milena D. Bister, Michael Strassnig, and Ursula Wagner, “Refusing the Information Paradigm: Informed Consent, Medical Research, and Patient Participation,” 103.

  4. 4.

    Robert Levine, “Informed Consent: Some Challenges to the Universal Validity of the Western Model,” 147.

  5. 5.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 444.

  6. 6.

    Tom Beauchamp and James Childress, Principles of Biomedical Ethics, 127.

  7. 7.

    Jessica W. Berg, Paul S. Applebaum, Charles W. Lidz, and Lisa S. Parker, Informed Consent: Legal Theory and Clinical Practice, 16.

  8. 8.

    Lewis Vaughn, Bioethics: Principles, Issues, and Cases, 144.

  9. 9.

    Robert Veatch, “Abandoning Informed Consent,” 5.

  10. 10.

    Jessica W. Berg, Paul S. Applebaum, Charles W. Lidz, and Lisa S. Parker, Informed Consent: Legal Theory and Clinical Practice, 21.

  11. 11.

    Constance MacIntosh, “Indigenous Self-Determination and Research on Human Genetic Material: A Consideration of the Relevance of Debates on Patents and Informed Consent, and the Political Demands on Researchers,” 236; Michael Brannigan and Judith Boss, Healthcare Ethics in a Diverse Society, 41.

  12. 12.

    H. Tristram Engelhardt Jr., The Foundations of Bioethics, 301; Lewis Vaughn, Bioethics: Principles, Issues, and Cases, 144.

  13. 13.

    Dan Brock, “Patient Competence and Surrogate Decision-Making,” 134.

  14. 14.

    Lewis Vaughn, Bioethics: Principles, Issues, and Cases, 144.

  15. 15.

    Robert Veatch, “Abandoning Informed Consent,” 6.

  16. 16.

    Janet L. Dolgin, “The Legal Development of the Informed Consent Doctrine: Past and Present,” 97; Alan Goldman, “The Refutation of Medical Paternalism,” 62.

  17. 17.

    Michael Burgess, “Beyond Consent: Ethical and Social Issues in Genetic Testing,” 508; Michael Brannigan and Judith Boss, Healthcare Ethics in a Diverse Society, 41.

  18. 18.

    Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 4–5.

  19. 19.

    John O. Beahrs and Thomas G. Gutheil, “Informed Consent in Psychotherapy,” 8.

  20. 20.

    Ulrike Felt, Milena D. Bister, Michael Strassnig, and Ursula Wagner, “Refusing the Information Paradigm: Informed Consent, Medical Research, and Patient Participation,” 103–104.

  21. 21.

    Stephen Wear, Informed Consent, 94–96; Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 70, 80.

  22. 22.

    Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 70, 185.

  23. 23.

    Onora O’Neill, “Gaining Autonomy and Losing Trust?” 18.

  24. 24.

    Jay Katz, “Physicians and Patients: A History of Silence,” 138.

  25. 25.

    Stephen Wear, Informed Consent, 52–53; Bernard Lo, Resolving Ethical Dilemmas, 21.

  26. 26.

    Svante Paabo, “The Human Genome and Our View of Ourselves,” 497; AMA, “Direct-to-Consumer Genetic Testing;” Cynthia Marietta and Amy McGuire, “Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?” 370.

  27. 27.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 431–433, 441–442, 444.

  28. 28.

    Cynthia James, Gail Geller, Barbara Bernhardt, et al., “Are Practicing and Future Physicians Prepared to Obtain Informed Consent? The Case of Genetic Testing for Susceptibility to Breast Cancer,” 204, 206, 209; Tom Beauchamp and James Childress, Principles of Biomedical Ethics, 130.

  29. 29.

    Daniel W. Fitzgerald, Cecile Marotte, Rose Irene Verdier, et al., “Comprehension during Informed Consent in a Less-Developed Country,” 1301; Jessica W. Berg, Paul S. Applebaum, Charles W. Lidz, and Lisa S. Parker, Informed Consent: Legal Theory and Clinical Practice, 65, 102.

  30. 30.

    Stephen Wear, Informed Consent, 61–62; Albert Jonsen, Mark Siegler, William Winslade, Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 59.

  31. 31.

    Stephen Wear, Informed Consent, 62.

  32. 32.

    Cynthia James, Gail Geller, Barbara Bernhardt, et al., “Are Practicing and Future Physicians Prepared to Obtain Informed Consent? The Case of Genetic Testing for Susceptibility to Breast Cancer,” 204, 206, 209.

  33. 33.

    Martha Macintyre, “Informed Consent and Mining Projects: A View from Papua New Guinea,” 59.

  34. 34.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 441–442.

  35. 35.

    Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 5.

  36. 36.

    Stephen Wear, Informed Consent, 62, 66; Berdik, Chris, “Genetic Tests Give Consumers Hints About Disease Risk; Critics Have Misgivings,” 3; Thomas Goetz, The Decision Tree, 122.

  37. 37.

    Stephen Wear, Informed Consent, 62.

  38. 38.

    Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 4–5; Tom Beauchamp, “Informed Consent,” 191.

  39. 39.

    John O. Beahrs and Thomas G. Gutheil, “Informed Consent in Psychotherapy,” 8.

  40. 40.

    Tom Beauchamp, “Informed Consent,” 191.

  41. 41.

    Jay Katz, “Physicians and Patients: A History of Silence,” 136.

  42. 42.

    Tom L. Beauchamp, “Informed Consent: Its History, Meaning, and Present Challenges,” 516.

  43. 43.

    Roberta M. Berry, “Informed Consent Law, Ethics, and Practice: From Infancy to Reflective Adolescence,” 72.

  44. 44.

    Howard Brody, “The Physician-Patient Relationship,” 78–79, 82.

  45. 45.

    Wear, Stephen, Informed Consent, 172.

  46. 46.

    Rebecca Erwin Wells and Ted J. Kaptchuk, “To Tell the Truth, the Whole Truth, May Do Patients Harm: The Problem of the Nocebo Effect for Informed Consent,” 22–29.

  47. 47.

    Chris Berdik, “Genetic Tests Give Consumers Hints About Disease Risk; Critics Have Misgivings,” 1–2; Stephen Wear, Informed Consent, 61–62, 77, 82; Thomas Goetz, The Decision Tree, 215.

  48. 48.

    Francis Collins and Victor McKusick, “Implications of the Human Genome Project for Medical Science,” 477.

  49. 49.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 443, 445.

  50. 50.

    Daniel W. Fitzgerald, Cecile Marotte, Rose Irene Verdier, et al., “Comprehension during Informed Consent in a Less-Developed Country,” 1301–1302.

  51. 51.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 444–445; Douglas Martin and Heather Greenwood, “Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing,” 106.

  52. 52.

    Onora O’Neill, “Gaining Autonomy and Losing Trust?” 16.

  53. 53.

    James Childress, Who Should Decide? Paternalism in Health Care, 13.

  54. 54.

    Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 8–9.

  55. 55.

    Stephen Wear, Informed Consent, 37–38.

  56. 56.

    Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 5, 10.

  57. 57.

    Michael Burgess, “Beyond Consent: Ethical and Social Issues in Genetic Testing,” 508–509, 511; Hana Osman, “History and Development of the Doctrine of Informed Consent,” 45–46; Constance MacIntosh, “Indigenous Self-Determination and Research on Human Genetic Material: A Consideration of the Relevance of Debates on Patents and Informed Consent, and the Political Demands on Researchers,” 237–238.

  58. 58.

    Terrence Ackerman, “Why Doctors Should Intervene,” 76.

  59. 59.

    Stephen Wear, Informed Consent. 67, 73, 95, 176; Thomas Goetz, The Decision Tree, xix, 141, 215; Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 80, 188–189; Edward Spencer, Ann Mills, Mary Rorty, and Patricia Werhane, Organization Ethics in Health Care, 36.

  60. 60.

    Lewis Vaughn, Bioethics: Principles, Issues, and Cases, 144.

  61. 61.

    Terrence Ackerman, “Why Doctors Should Intervene,” 74.

  62. 62.

    The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, “The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research,” 768.

  63. 63.

    Joseph Goldstein, “For Harold Lasswell: Some Reflections on Human Dignity, Entrapment, Informed Consent, and the Plea Bargain,” 691–692, 701–702; Jessica Berg, Paul Appelbaum, Charles Lidz, and Lisa Parker, Informed Consent Legal Theory and Clinical Practice, 152.

  64. 64.

    James Childress, Who Should Decide? Paternalism in Health Care, 136.

  65. 65.

    The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, “The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research,” 768; Terrence Ackerman, “Why Doctors Should Intervene,” 74–75.

  66. 66.

    M. Sara Rosenthal, “Informed Consent in the Nuclear Medicine Setting,” 2.

  67. 67.

    Debra Pinals and Paul Applebaum, “The History and Current Status of Competence and Informed Consent in Psychiatric Research,” 88.

  68. 68.

    H. Tristram Engelhardt Jr., The Foundations of Bioethics, 304.

  69. 69.

    Jeffrey Carlisle and Ann T. Neulicht, “The Necessity of Professional Disclosure and Informed Consent for Rehabilitation Counselors,” 28.

  70. 70.

    Lewis Vaughn, Bioethics: Principles, Issues, and Cases, 144.

  71. 71.

    Jessica Berg, Paul Appelbaum, Charles Lidz, and Lisa Parker, Informed Consent Legal Theory and Clinical Practice, 152.

  72. 72.

    Michael Brannigan and Judith Boss, Healthcare Ethics in a Diverse Society, 41.

  73. 73.

    Allen Buchanan, Dan Brock, Norman Daniels, and Daniel Wikler, “From Chance to Choice: Genetics and Justice,” 491–492.

  74. 74.

    Stephen Wear, Informed Consent, 94–7; Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 445; Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 166.

  75. 75.

    Bill Runciman, Alan Merry, and Merrilyn Walton, Safety and Ethics in Healthcare, 94; Stephen Wear, Informed Consent, 54–55.

  76. 76.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 443.

  77. 77.

    Daniel W. Fitzgerald, Cecile Marotte, Rose Irene Verdier, et al., “Comprehension during Informed Consent in a Less-Developed Country,” 1301–1302.

  78. 78.

    Lori Andrews, Jane Fullarton, Neil Holtzman, eds., et al., Committee on Assessing Genetic Risks, Institute of Medicine, Assessing Genetic Risks: Implications for Health and Social Policy, 195.

  79. 79.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 364.

  80. 80.

    Ian Young, Introduction to Risk Calculation in Genetic Counseling, 5.

  81. 81.

    Neil F. Sharpe and Ronald Carter, Genetic Testing, 131.

  82. 82.

    Tom Beauchamp and James Childress, Principles of Biomedical Ethics, 128.

  83. 83.

    Tom Beauchamp and James Childress, Principles of Biomedical Ethics, 130–131.

  84. 84.

    National Bioethics Advisory Commission, “Protecting Research Participants— A Time for Change,” 374.

  85. 85.

    David Wright, “Redesigning Informed Consent Tools for Specific Research,” 151.

  86. 86.

    Terrence Ackerman, “Why Doctors Should Intervene,” 75–77; Allen Buchanan, “From Chance to Choice: Genetics and Justice,” 491; Chris Berdik, “Genetic Tests Give Consumers Hints About Disease Risk; Critics Have Misgivings,” 1–2; Stephen Wear, Informed Consent, 61–62, 77, 82; Thomas Goetz, The Decision Tree, 215; James Childress, Who Should Decide? Paternalism in Health Care, 135–136.

  87. 87.

    Debra Pinals and Paul Applebaum, “The History and Current Status of Competence and Informed Consent in Psychiatric Research,” 90.

  88. 88.

    Tom Beauchamp and James Childress, Principles of Biomedical Ethics, 128.

  89. 89.

    Patricia Kelly, “Cancer Risks in Perspective: Information and Approaches for Clinicians,” 397.

  90. 90.

    Ian Young, Introduction to Risk Calculation in Genetic Counseling, 4–5; Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 2.

  91. 91.

    James Childress, Who Should Decide? Paternalism in Health Care, 135–136.

  92. 92.

    Stephen Wear, Informed Consent, 95, 97.

  93. 93.

    Thomas Goetz, The Decision Tree, xvii, 4; Stephen Wear, Informed Consent, 72–74; Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 4.

  94. 94.

    Debra Pinals and Paul Applebaum, “The History and Current Status of Competence and Informed Consent in Psychiatric Research,” 90.

  95. 95.

    Francis Collins and Victor McKusick, “Implications of the Human Genome Project for Medical Science,” 478.

  96. 96.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 442.

  97. 97.

    Debra Pinals and Paul Applebaum, “The History and Current Status of Competence and Informed Consent in Psychiatric Research,” 88.

  98. 98.

    Ulrike Felt, Milena D. Bister, Michael Strassnig, and Ursula Wagner, “Refusing the Information Paradigm: Informed Consent, Medical Research, and Patient Participation,” 103–104.

  99. 99.

    Cynthia James, Gail Geller, Barbara Bernhardt, et al., “Are Practicing and Future Physicians Prepared to Obtain Informed Consent? The Case of Genetic Testing for Susceptibility to Breast Cancer,” 203; Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 444–445.

  100. 100.

    Daniel W. Fitzgerald, Cecile Marotte, Rose Irene Verdier, et al., “Comprehension during Informed Consent in a Less-Developed Country,” 1302.

  101. 101.

    Rebecca Erwin Wells and Ted J. Kaptchuk, “To Tell the Truth, the Whole Truth, May Do Patients Harm: The Problem of the Nocebo Effect for Informed Consent,” 22–29.

  102. 102.

    Tom Beauchamp and James Childress, Principles of Biomedical Ethics, 129–130.

  103. 103.

    Debra Pinals and Paul Applebaum, “The History and Current Status of Competence and Informed Consent in Psychiatric Research,” 90.

  104. 104.

    Terrence Ackerman, “Why Doctors Should Intervene,” 75–77; Allen Buchanan, “From Chance to Choice: Genetics and Justice,” 491.

  105. 105.

    Howard Brody, “The Physician-Patient Relationship,” 82–83.

  106. 106.

    Howard Brody, “The Physician-Patient Relationship,” 85.

  107. 107.

    Albert Jonsen, The Birth of Bioethics, 144–146.

  108. 108.

    Stephen Wear, Informed Consent, 95–96; Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 70, 80; Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 11.

  109. 109.

    Tom Beauchamp and James Childress, Principles of Biomedical Ethics, 130.

  110. 110.

    Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 6.

  111. 111.

    Cynthia James, Gail Geller, Barbara Bernhardt, et al., “Are Practicing and Future Physicians Prepared to Obtain Informed Consent? The Case of Genetic Testing for Susceptibility to Breast Cancer,” 204, 207–210; Lewis Vaughn, Bioethics: Principles, Issues, and Cases, 146; Janet Dolgin and Lois Shepherd, Bioethics and the Law, 59.

  112. 112.

    James Childress, Who Should Decide? Paternalism in Health Care, 135–136.

  113. 113.

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

  114. 114.

    Barbara Bowles Biesecker, “Privacy in Genetic Counseling,” 108–109; Michael Arribas-Ayllon, Srikant Sarangi, and Angus Clarke, Genetic Testing: Accounts of Autonomy, Responsibility and Blame, 122.

  115. 115.

    Angus Clarke, “Genetic Counseling,” 132; Michael Arribas-Ayllon, Srikant Sarangi, and Angus Clarke, Genetic Testing: Accounts of Autonomy, Responsibility and Blame, 122.

  116. 116.

    Jeffrey Carlisle and Ann T. Neulicht, “The Necessity of Professional Disclosure and Informed Consent for Rehabilitation Counselors,” 29; Robin Bennett, The Practical Guide to The Genetic Family History, 253; Michael Arribas-Ayllon, Srikant Sarangi, and Angus Clarke, Genetic Testing: Accounts of Autonomy, Responsibility and Blame, 122.

  117. 117.

    Lewis Vaughn, Bioethics: Principles, Issues, and Cases, 148.

  118. 118.

    Stephen Wear, Informed Consent, 62, 66.

  119. 119.

    Michael Arribas-Ayllon, Srikant Sarangi, and Angus Clarke, Genetic Testing: Accounts of Autonomy, Responsibility and Blame, 125–127.

  120. 120.

    Barbara Bowles Biesecker, “Privacy in Genetic Counseling,” 110–112.

  121. 121.

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

  122. 122.

    Michael Arribas-Ayllon, Srikant Sarangi, and Angus Clarke, Genetic Testing: Accounts of Autonomy, Responsibility and Blame, 122; Angus Clarke, “Genetic Counseling,” 141–142; Barbara Bowles Biesecker, “Privacy in Genetic Counseling,” 111–112.

  123. 123.

    Kathryn Holt, “What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Status and Predictive Genetic Testing,” 262.

  124. 124.

    Clara L. Gaff, Veronica Collins, Tiffany Symes, et al., “Facilitating Family Communication about Predictive Genetic Testing: Probans’ Perceptions,” 138.

  125. 125.

    Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 70, 80.

  126. 126.

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

  127. 127.

    Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 83, 165.

  128. 128.

    Angela Trepanier, Mary Ahrens, Wendy McKinnon, et al., “Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors,” 103, 105; Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 125; Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 433–434.

  129. 129.

    Leon Eisenberg, “Why has the Relationship Between Psychiatry and Genetics Been so Contentious?” 380.

  130. 130.

    Jeffrey R. Botkin, Steven M. Teutsch, Celia I. Kaye, et al., “Outcomes of Interest in Evidence-Based Evaluations of Genetic Tests,” 230–231.

  131. 131.

    Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 167.

  132. 132.

    Ian Young, Introduction to Risk Calculation in Genetic Counseling, 5.

  133. 133.

    Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 71.

  134. 134.

    Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 83.

  135. 135.

    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 131; David Orentlicher, “Genetic Privacy in the Patient-Physician Relationship,” 80; Bernard Lo, Resolving Ethical Dilemmas, 19; Angela Trepanier, Mary Ahrens, Wendy McKinnon, et al., “Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors,” 105–106; Jeffrey R. Botkin, Steven M. Teutsch, Celia I. Kaye, et al., “Outcomes of Interest in Evidence-Based Evaluations of Genetic Tests,” 232.

  136. 136.

    Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 125.

  137. 137.

    David Orentlicher, “Genetic Privacy in the Patient-Physician Relationship,” 81.

  138. 138.

    Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 165.

  139. 139.

    Regina E. Ensenauer, Virginia V. Michels, and Shanda S. Reinke, “Genetic Testing: Practical, Ethical, and Counseling Considerations,” 71; Jeffrey R. Botkin, Steven M. Teutsch, Celia I. Kaye, et al., “Outcomes of Interest in Evidence-Based Evaluations of Genetic Tests,” 234.

  140. 140.

    Angus Clarke, “Genetic Counseling,” 133–134; Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 165, 167; Angela Trepanier, Mary Ahrens, Wendy McKinnon, et al., “Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors,” 103, 105; Katja Aktan-Collan, Jukka-Pekka Mecklin, Albert de la Chapelle, et al., “Evaluation of a Counselling Protocol for Predictive Genetic Testing for Hereditary Non-Polyposis Colorectal Cancer,” 111.

  141. 141.

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

  142. 142.

    Robert Klitzman, Deborah Thorne, Jennifer Williamson, et al., “The Roles of Family Members, Health Care Workers, and Others in Decision-Making Processes about Genetic Testing among Individuals at Risk for Huntington Disease,” 369; Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 168.

  143. 143.

    David Wright, “Redesigning Informed Consent Tools for Specific Research,” 148.

  144. 144.

    Jessica W. Berg, Paul S. Applebaum, Charles W. Lidz, and Lisa S. Parker, Informed Consent: Legal Theory and Clinical Practice, 66; Kathryn Holt, “What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Status and Predictive Genetic Testing,” 264.

  145. 145.

    Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 23.

  146. 146.

    Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 5, 7.

  147. 147.

    Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics, 23.

  148. 148.

    National Bioethics Advisory Commission, “Protecting Research Participants— A Time for Change,” 374.

  149. 149.

    Benjamin Freedman, “Offering Truth: Once Ethical Approach to the Uninformed Cancer Patient,” 113.

  150. 150.

    Michael Brannigan and Judith Boss, Healthcare Ethics in a Diverse Society, 41.

  151. 151.

    Genomics & Genetics Weekly staff, “Genetic Testing: Studies Point to Variable Prognostic Abilities and Question if Testing Results in Behavioral Change,” 11–12.

  152. 152.

    Ulrike Felt, Milena D. Bister, Michael Strassnig, et al., “Refusing the Information Paradigm: Informed Consent, Medical Research, and Patient Participation,” 93; Marion Harris, Ingrid Winship, Merle Spriggs, “Controversies and Ethical Issues in Cancer-Genetics Clinics,” 301; Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1348.

  153. 153.

    Michael Hayden, “Predictive Testing for Huntington’s Disease: A Universal Model?” 141; Marita Broadstock, Susan Michie, Theresa Marteau, “Psychological Consequences of Predictive Genetic Testing: A Systematic Review,” 734.

  154. 154.

    Shoshana Shiloh and Shiri Ilan, “To Test or Not To Test? Moderators of the Relationship Between Risk Perceptions and Interest in Predictive Genetic Testing,” 477; Michael Burgess, “Beyond Consent: Ethical and Social Issues in Genetic Testing,” 508; Angela Trepanier, Mary Ahrens, Wendy McKinnon, et al., “Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors,” 88, 90, 103, 109.

  155. 155.

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

  156. 156.

    Daniel W. Fitzgerald, Cecile Marotte, Rose Irene Verdier, et al., “Comprehension during Informed Consent in a Less-Developed Country,” 1302; Robert M. Arnold and Charles W. Lidz, “Informed Consent: Clinical Aspects of Consent in Health Care,” 5.

  157. 157.

    Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 442, 444–445; Robin Bennett, The Practical Guide to The Genetic Family History, 253.

  158. 158.

    Angela Trepanier, Mary Ahrens, Wendy McKinnon, et al., “Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors,” 107–108; Barbara Bowles Biesecker, “Privacy in Genetic Counseling,” 108–109; Katja Aktan-Collan, Jukka-Pekka Mecklin, Albert de la Chapelle, et al., “Evaluation of a Counselling Protocol for Predictive Genetic Testing for Hereditary Non-Polyposis Colorectal Cancer,” 111.

  159. 159.

    Jeffrey R. Botkin, Steven M. Teutsch, Celia I. Kaye, et al., “Outcomes of Interest in Evidence-Based Evaluations of Genetic Tests,” 232; Robert Klitzman, “Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease,” 443.

  160. 160.

    David Ball, Audrey Tyler, and Peter Harper, “Predictive Testing of Adults and Children,” 70.

  161. 161.

    Robert Wachbroit, “Disowning Knowledge: Issues in Genetic Testing,” 497.

  162. 162.

    Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, 198.

  163. 163.

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    Leon Eisenberg, “Why has the Relationship Between Psychiatry and Genetics Been so Contentious?” 380.

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    Michael Burgess, “Beyond Consent: Ethical and Social Issues in Genetic Testing,” 508.

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    Angus Clarke, “Genetic Counseling,” 143.

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    Courtney Storm, Rinki Agarwal, and Kenneth Offit, “Ethical and Legal Implications of Cancer Genetic Testing: Do Physicians Have a Duty to Warn Patients’ Relatives about Possible Genetic Risks?” 230.

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    Bernard Lo, Resolving Ethical Dilemmas, 20.

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    John Kilner, Rebecca Pentz, and Frank Young, eds., Genetic Ethics, 33.

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    Jonathan Glover, “Eugenics: Some Lessons from the Nazi Experience,” 472.

  199. 199.

    Tom Beauchamp, “Informed Consent,” 201.

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    H. Tristram Engelhardt Jr., The Foundations of Bioethics, 331.

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    Torbjorn Tannsjo, Coercive Care: The Ethics of Choice in Health and Medicine, 9.

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    Tom Beauchamp and James Childress, Principles of Biomedical Ethics, 50, 58, 93; Linda Farber Post, Jeffrey Blustein, Nancy Neveloff Dubler, Handbook for Health Care Ethics Committees, 42.

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    Ruth Chadwick, “Genetic Screening,” 197.

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    Torbjorn Tannsjo, Coercive Care: The Ethics of Choice in Health and Medicine, 9.

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    John Kilner, Rebecca Pentz, and Frank Young, eds., Genetic Ethics, 33.

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    Tom Beauchamp and LeRoy Walters eds., Contemporary Issues in Bioethics, 452; Anita Silvers and Michael Ashley Stein, “An Equality Paradigm for Preventing Genetic Discrimination,” 1347.

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    James Watson, “Genes and Politics,” 483–484.

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    Lori B. Andrews, “Gen-Etiquette: Genetic Information, Family Relationships, and Adoption,” 256.

  211. 211.

    Michael Burgess, “Beyond Consent: Ethical and Social Issues in Genetic Testing,” 510.

  212. 212.

    Robert Wachbroit, “Disowning Knowledge: Issues in Genetic Testing,” 499.

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    Michael Arribas-Ayllon, Srikant Sarangi, and Angus Clarke, Genetic Testing: Accounts of Autonomy, Responsibility and Blame, 126; Kathryn Holt, “What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Status and Predictive Genetic Testing,” 262–263.

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    Linda Farber Post, Jeffrey Blustein, Nancy Neveloff Dubler, Handbook for Health Care Ethics Committees, 42–43.

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    Jessica W. Berg, Paul S. Applebaum, Charles W. Lidz, and Lisa S. Parker, Informed Consent: Legal Theory and Clinical Practice, 67.

  223. 223.

    Ruth Macklin, “The Inner Workings of an Ethics Committee: Latest Battle over Jehovah’s Witnesses,” 233.

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    Donna Dickenson, Risk and Luck in Medical Ethics, 173.

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    Laura Weiss Roberts, “Informed Consent and the Capacity for Voluntarism,” 709.

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  228. 228.

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    John Kilner, Rebecca Pentz, Frank Young, eds., Genetic Ethics, 30.

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    Michael Brannigan and Judith Boss, Healthcare Ethics in a Diverse Society, 63.

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    Neil Sharpe and Ronald Carter, Genetic Testing: Care, Consent, and Liability, 364.

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    Lori B. Andrews, “Gen-Etiquette: Genetic Information, Family Relationships, and Adoption,” 265–266.

  237. 237.

    Michael Brannigan and Judith Boss, Healthcare Ethics in a Diverse Society, 264–265.

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    Catherine Hayes, “Genetic Testing for Huntington’s Disease—A Family Issue,” 1450; Michael Burgess, “Beyond Consent: Ethical and Social Issues in Genetic Testing,” 510.

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    Michael Brannigan and Judith Boss, Healthcare Ethics in a Diverse Society, 264–265.

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    Howard Brody, Transparency: Informed Consent in Primary Care, 8–9.

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    David Shore, The Trust Prescription for Healthcare: Building Your Reputation with Consumers, 155.

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    Onora O’Neill, “Gaining Autonomy and Losing Trust?” 16, 18.

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    Roberta M. Berry, “Informed Consent Law, Ethics, and Practice: From Infancy to Reflective Adolescence,” 73.

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    Steve Lee, “The Physician as an Evolving Moral Actor,” 682.

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    David Shore, The Trust Prescription for Healthcare: Building Your Reputation with Consumers, xiii, 5; Stephen Wear, Informed Consent, 33, 50, 81; Roberta M. Berry, “Informed Consent Law, Ethics, and Practice: From Infancy to Reflective Adolescence,” 73.

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    Barbara Bowles Biesecker, “Privacy in Genetic Counseling,” 112.

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    David Shore, The Trust Prescription for Healthcare: Building Your Reputation with Consumers, 72–73; Alfred Tauber, Patient Autonomy and the Ethics of Responsibility, 167–168.

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    Jessica Minor

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Minor, J. (2015). Revised Model of Informed Consent. In: Informed Consent in Predictive Genetic Testing. Springer, Cham. https://doi.org/10.1007/978-3-319-17416-7_4

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