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Jahrbuch für Recht und Ethik / Annual Review of Law and Ethics

Bd. 4 (1996). Themenschwerpunkt: Bioethik und Medizinrecht / Bioethics and the Law

Editors: Byrd, B. Sharon | Hruschka, Joachim | Joerden, Jan C.

Jahrbuch für Recht und Ethik / Annual Review of Law and Ethics, Vol. 4

(1996)

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About The Author

Joachim Hruschka, Rechtswissenschaftler, promovierte und habilitierte an der Ludwig-Maximilians-Universität München. 1972 erhielt er die Professur für Strafrecht, Strafprozessrecht und Rechtsphilosophie an der Universität Hamburg. Von 1982 bis 2004 war Hruschka Inhaber des Lehrstuhls für Strafrecht, Strafprozessrecht und Rechtsphilosophie an der Friedrich-Alexander-Universität Erlangen-Nürnberg. Er war Mitherausgeber des »Jahrbuchs für Recht und Ethik« (Duncker & Humblot). Hruschka verstarb im Dezember 2017.

Jan C. Joerden, 1978/81 1. und 2. Juristische Staatsprüfung; 1982–1988 Akad. Rat in Erlangen; 1985 Promotion; 1987 Habilitation, Erlangen-Nürnberg. 1988–93 Heisenberg-Stipendiat der DFG und Lehrstuhlvertretungen in Berlin, Erlangen, Jena und Trier. 1993 Lehrstuhl für Strafrecht, insbesondere Internationales Strafrecht und Strafrechtsvergleichung, Rechtsphilosophie an der Europa-Universität Viadrina Frankfurt (Oder). 1994–1998 Prorektor. Seit 1995 Geschäftsführender Leiter des Interdisziplinären Zentrums für Ethik (IZE). 1996 Berufung auf den Lehrstuhl für Strafrecht, Strafprozeßrecht und Rechtsphilosophie, Universität Rostock (abgelehnt). 1998–2002 Prorektor/Vizepräsident der Europa-Universität für das Collegium Polonicum in Slubice/Polen. 2001 Berufung auf den Lehrstuhl für Strafrecht, Strafprozeßrecht und Wirtschaftsstrafrecht, Universität Augsburg (abgelehnt). Seit 2002 Mitglied im Vorstand der IVR, Deutsche Sektion. 2004 »Medaille für Verdienste um die Adam-Mickiewicz-Universität zu Posen«. 2007/08 Senior Fellow am Alfried Krupp Wissenschaftskolleg Greifswald. 2009/10 Leiter einer Forschungsgruppe am Zentrum für interdisziplinäre Forschung (ZiF) der Universität Bielefeld. 2015 Dr. h.c. der Adam-Mickiewicz-Universität Poznan (Polen). Seit 2016 Mitglied im Vorstand der Akademie für Ethik in der Medizin e.V., Göttingen. 2017 Medaille »Universitatis Lodziensis Amico«, Universität Łódź (Polen).

Abstract

Dieser Band des "Jahrbuchs für Recht und Ethik" widmet sich schwerpunktmäßig dem Thema "Bioethik und Medizinrecht". Die Beiträge stammen von Biologen, Juristen, Medizinethikern, Medizinern, Ökonomen, Philosophen, Politologen und Verhaltensforschern aus Chile, Deutschland, Israel, Japan, Österreich, Spanien und den Vereinigten Staaten. Obwohl jeder Band des "JRE" ein ausgewähltes Thema betont, sollen andere Fragestellungen, die Themen aus dem Bereich von Recht und Ethik betreffen, nicht ausgeschlossen werden. Dementsprechend enthält dieser Band auch einige Artikel, die sich dem Feld der normativen Ethik widmen.This volume of the "Annual Review of Law and Ethics" is primarily devoted to the topic "Bioethics and the Law". It includes the contributions of behavioral scientists, biologists, economists, lawyers, medical ethicists, physicians, philosophers and political scientists from the nations of Austria, Chile, Germany, Israel, Japan, Spain and the United States. Although each volume of the "Annual Review" emphasizes one particular topic, it does not exclude other areas of interest within the general framework of law and ethics. Accordingly, this volume also includes articles generally addressing issues of normative ethics.

Table of Contents

Section Title Page Action Price
Vorwort V
Table of Contents VII
Genetic Technology 1
Ellen Wright Clayton: Problems Posed by Genetics for Law and Ethics: American Policies 3
I. Characteristics of Scientific Research and Health Care in the United States that May Affect Development and Use of Genetic Tests 3
1. Factors Favoring the Spread of New Technology 4
2. Factors that Tend to Limit Patients' Options Regarding These Technologies 4
a) The Limited Role of Informed Consent – A Vision of Patient Choice Largely Unfulfilled 4
b) The Roles of Efficacy and Third Party Payment 5
c) The Problem of \"Genetic Discrimination 6
3. Limits on Changing Patients' Behavior 7
II. How Do these Conflicting Forces Affect the Dispersion of Genetic Technology? 9
1. The Case of Limited Efficacy in Treating Adult Diseases and Predispositions 9
2. The Case of Proven Intervention for Adult Diseases and Predispositions 10
3. The Special Case of Children 12
4. The Special Case of Reproductive Genetic 13
5. Reflections on Personal Responsibility for Health 16
Conclusion 18
Zusammenfassung 18
Gonzalo Herranz: The Development and Dispersion of Technologies for Diagnosis of Genetic Diseases: A European Response 21
I. In Search of Contrasts 21
1. Is there Really a Divide between America and Europe? 21
2. The Apparent Unity of Europe 22
II. The Present State of Genetic Law and Ethics in Europe 24
ΙII. American-European Contrasts 25
1. Who Will Pay? The Different Role of Private Initiative and Public Control 25
2. Who Will Decide? The Place of Individual Autonomy 29
3. Special Problems Posed by Prenatal Diagnosis 29
4. The special Case of Children 31
5. Problems of Insurance and Employment 32
IV. Conclusion 32
Zusammenfassung 33
Albrecht E. Sippel: Gene Therapy – A New Medical Technique and Points to Consider 35
I. The Moral Obligation to Disseminate Biological Knowledge 35
II. From Genome Knowledge to Disease Gene Therapy 37
IIΙ. Present Methodical Problems of Somatic Gene Therapy 39
1. The Stem Cell Problem 39
2. Cell-Type Specific Gene Transfer 39
3. Transgene Regulation 40
4. Gene Addition and Gene Replacement 41
IV. Points to Consider in Somatic Gene Therapy 41
1. No Donor Problem 42
2. Patenting Medical Therapeutic Procedures 42
3. Safety, Efficacy, Informed Consent and Confidentiality 43
4. The Border between Therapy and Enhancement 44
V. The Border between Somatic and Germline Gene Therapy 45
Acknowledgements 47
Zusammenfassung 47
Roger B. Dworkin: Law and Ignorance: Genetic Therapy and the Legal Process 49
Gene Therapy 50
Process Values 55
Process versus Substance 58
Actual Legal Response 60
Conclusion 64
Zusammenfassung 65
Hans-Martin Sass: Copernican Challenge of Genetic Prediction in Human Medicine 67
I. Health Responsibility and the Right and Duty to Know 68
II. New Challenges: Healing or Enhancing? 70
ΙII. Germ-line Therapy and the Eugenic Caveat 72
IV. Genetic Knowledge and Cultures of Responsibility 74
Zusammenfassung 76
Literature 77
Rita Kielstein: Clinical and Clinical-Ethical Aspects of Genetic Prediction The Case: Hereditary Kidney Disorders 81
Introduction: A Multi-Generational Family Story 81
I. DNA-Based Prediction of Severe Genetic Disorders 82
II. Risk and Responsibility of Patients with ADPKD 83
1. Genetics and Prognosis 83
2. Symptoms and Signs 84
3. Risks and Patients' Responsibilities 85
IIΙ. Parents' Risks and Responsibilities 86
1. The Case of Anita M. 86
2. Values at Conflict 86
3. Medical Moral Scenario for Responsible Parenthood 87
4. Identifying Risk Takers and Moral Agents 88
IV. Conclusions 89
Zusammenfassung 90
Literaturverzeichnis 91
Frances Myrna Kamm: Genetic Therapy, Disability and Enhancement 93
I. Disability 93
II. Enhancement 94
ΙII. Methodology 97
Zusammenfassung 98
Hartmut Kliemt: Pränataldiagnostik und genetisches Screening im freiheitlich-demokratischen Rechtsstaat 99
I. Einleitung 99
II. Stand und voraussichtliche Entwicklung der pränatalen Diagnostik 100
ΙII. Zur Zwangsfinanzierung pränataldiagnostischer Verfahren 102
1. Versicherungen 102
2. Staatsaufgabe 104
IV. Medizinische Intervention und pränatale Diagnostik 106
1. Abtreibung 106
2. Therapie 108
V. Schlußbemerkungen 109
Summary 110
Literaturverzeichnis 110
Allocation of Scarce Resources 113
Keith N. Hylton: The Law and Ethics of Organ Sales 115
I. Introduction 115
II. A Reassessment of Moral Objections to the Sale of Body Parts 117
A. Dignity, Personhood, and Human Flourishing 117
B. Commodification and Incommensurability 128
C. Equity 131
D. Some Notes on Implementation 134
ΙII. Conclusion 136
Zusammenfassung 136
Lloyd R. Cohen / Melisa Michelsen: The Efficiency/Equity Puzzle and the Race Issue in Kidney Allocation: A Reply to Ayres, et al. and UNOS 137
I. The Kidney Shortage 139
II. Medical Aspects of Kidney Transplantation and Allocation 142
IIΙ. Legislative and Regulatory Background 144
IV. The Ayres Thesis and Policy Proposal 147
V. The Efficacy of HLA Antigen Matching 151
VI. The Equity/Efficiency Dichotomy 156
VII. The 0 rule and the Pre-Sensitivity Preference 162
A. The 0 Rule 163
B. Pre-Sensitization 165
VIII. Theoretical Standards and Operational Measures in Kidney Allocation 169
A. Race as a Theoretical Standard for Kidney Allocation 171
B. Race As An Operational Tool in Kidney Allocation 178
IX. Reform UNOS or Abandon It? 180
X. Conclusion 184
Zusammenfassung 185
Patients' Rights 187
David Heyd: Experimentation on Trial. Why Should One Take Part in Medical Research? 189
The Ethical Basis of Experimentation on Human Subjects 189
I. Rational Choice 192
II. Justice and Fairness 194
IIΙ. Virtue and Solidarity 198
Conclusion 202
Zusammenfassung 203
Jan C Joerden: Should We Take Part in Medical Research? A Commentary on David Heyd's \"Experimentation on Trial 205
I. 205
II. 205
III. 208
IV. 210
Zusammenfassung 212
Raphael Cohen-Almagor: Patients' Right to Die in Dignity and the Role of Their Beloved People 213
I. Introduction 213
II. Dworkin's Contentions 216
III. Best Interests of Whom? The Patient's Wants and his or her Beloved-ones' Commitments 221
IV. Court Cases 224
1. Saikewicz 224
2. Spring 226
3. Gray v. Romeo 229
V. Conclusions 231
Zusammenfassung 232
Deborah Spitz: Collaboration Between Psychiatrist and Patient: How Avoidable is Paternalism? 233
Introduction 233
What is Paternalism? 234
The Varieties of Doctor-Patient Relationships 237
The Realities of Psychiatric Practice 238
Must Paternalism and Autonomy Be Mutually Exclusive? 241
Clinical Dilemmas of Collaboration and Paternalism 243
From Conflict toward Collaboration: One Patient 244
Treatment Planning: A Collaborative Process 246
Zusammenfassung 247
Matthias Kettner: Discourse Ethics and Health Care Ethics Committees 249
I. Whence the Moral Authority of Consensus? The Problem 249
II. Carving HECs at their Moral Joints. An Analytic Framework 255
IIΙ. Discourse Ethics. Outline of a Solution 259
1. Argumentative Consensus Building in the Face of Moral Pluralism 259
2. Moral Perspectives 263
3. Discourse Ethics and other Moral Paradigms 264
4. Disputing Norms, Values, and Facts 267
5. Apelian (\"transcendental-pragmatic\") Discourse Ethics 269
Zusammenfassung 272
Dieter Giesen: Patient-Physician Communication and the Law's Requirements 273
I. Introduction 273
II. Legal Requirements concerning the Communication between Patient and Doctor 280
1. Practical Difficulties 283
2. Communication Aids 287
3. Consent Forms 289
4. Waiver 295
ΙII. Conclusion 298
Zusammenfassung 299
Gabriele Wolfslast: Aufklärungspflicht zwischen Informationsrecht und begrenzter Belastbarkeit des Patienten 301
I. 301
II. 304
III. 307
IV. 309
Summary 313
Urban Wiesing: Die Integrität der Arztrolle in Zeiten des Wandels 315
I. Die moralischen Grundlagen der Arztrolle: ,Freiwilligkeit, Vertrauen und Integrität' 315
II. Begrenzung der ärztlichen Verantwortung 319
IIΙ. Soll die Arztrolle erhalten bleiben? 323
IV. Allokationen und die Integrität der Arztrolle 324
Summary 325
Advance Directives in Multicultural Perspective 327
Hans-Martin Sass: Regelungsbedarf bei Patientenverfügungen und klinisch-ethischen Entscheidungskonflikten? 329
Literatur 332
L. S. Rothenberg et al.: The Relationship of Clinical and Legal Perspectives Regarding Medical Treatment Decision-Making in Four Cultures 335
I. Introduction 335
II. National Analysis 339
A. Chile 340
1. Clinical Features 340
2. Medico-Legal Features 342
3. Experience with Advance Directives and Surrogate Decision 343
Β. Germany 344
1. Clinical Features 344
2. Medico-Legal Features 346
3. Experience with Advance Directives and Surrogate Decision 348
C. Japan 349
1. Clinical Features 349
2. and 3. Medico-Legal Features, and Experience with Advance Directives and Surrogate Decision-Making 353
D. United States of America 358
1. Clinical Features 358
2. and 3. Medico-Legal Features, and Experience with Advance Directives and Surrogate Decision-Making 359
a) Discussion of Trends and Evolutions in Law and Medicine 359
b) Usefulness of Advance Directive Legislation in the United States 366
ΙII. Cross-Cultural Similarities and Differences 368
IV. Closing Discussion and Recommendations 369
Discussion 378
Zusammenfassung 378
Johannes Gobertus Meran: Advance Directives and Surrogate Decision Making Ethical Questions, Legal Response and Clinical Summary. A Critical View 381
Introduction 381
1. Definition 381
2. Important Distinctions 382
3. Goal 382
4. Structure 383
A. Philosophical Questions 384
1. Conceptual Presuppositions 384
a) Autonomy 384
b) Advance Directives and Autonomy 385
c) Different Views on Personal Identity 385
d) Changing Identity and Advance Directives 388
e) Consequences of the \"Compromise Model 393
f) Conclusion 394
2. Problems of Information 396
a) Lack of Descriptive Information 396
b) Lack of Communication and Feedback 396
c) Lack of Procedural Development 397
3. Problem of Normative Assessment 397
4. Changing Needs and the Problem of Self-Binding 399
a) Question of Authority 402
b) The Clinical View Argument 402
c) Is Self-binding Morally Justifiable? 402
d) Self-binding and Conflicting Desires 403
e) Limits on Self-binding Arrangements 404
f) Self-binding Advance Directives and Possible Harm 406
g) Self-binding and Revocability 407
h) Conclusion 408
5. Practical Shortcomings 409
6. Normative Interpretation by the Physician 410
7. Procedural Problems 411
B. Legal Response in England and Germany 411
1. Problems of Comparison 411
2. The Situation in England 412
3. The Situation in Germany 413
4. Legal Responses in Detail 415
a) Personal Identity 415
b) Problems of Information 418
c) Normative Assessment 422
d) Self-binding Character of Advance Directives 425
e) Interpretation by Doctors 427
f) Further Practical Shortcomings 430
5. Summary and Clinical View 431
Bibliography 434
Zusammenfassung 442
Erwin Bernat / Hans-Georg Koch / Alan Meisel: Das „Patiententestament\" und der „Stellvertreter in Gesundheitsangelegenheiten\". Ein Vergleich des deutschen, amerikanischen und japanischen Rechts 445
I. Einleitung 445
II. Das Selbstbestimmungsrecht als Grundlage eines antizipierten Behandlungsverzichts 446
1. Deutschland 447
2. USA 449
3. Japan 450
III. Rechtsfortbildung durch Richterrecht 452
1. Der Stellenwert richterlicher Entscheidungen 452
2. Kasuistik 453
IV. Rechtsfortbildung durch Gesetzgebung 458
1.,Living Will´ 458
2. Der „Stellvertreter in Gesundheitsangelegenheiten 460
3. ,Family Decision Making' 461
V. Resümee 462
Summary 464
Hans-Martin Sass et al.: Advance Health Care Documents in Multicultural Perspectives 465
Why Should We Have Advance Directives? 466
Why do People not have Advance Directives? 469
How To Promote Medical Advance Directives 473
A. Law, Procedures, and Attitudes 473
B. Incentives 476
C. Education and Public Discourse 477
What Form of Advance Directive Should We Have? 478
A. Which Method Should be Used to Write ACDs? 478
B. Is there a Best and Universal Form for an ACD? 480
When Advance Directives are Absent 483
Conclusion 486
A. The Importance of Communication and Trust 486
B. The Common Challenge 488
References 488
Zusammenfassung 508
Madison Powers / Carmen Kaminsky / Motoko Hayashi: AIDS and Advance Directives: Clinical, Legal and Ethical Perspectives in Japan, Germany and the United States 509
I. Introduction: AIDS and Advance Directives in Three Countries 509
II. Case Studies 513
ΙII. Conclusion 527
Zusammenfassung 528
Robert S. Olick et al.: Advance Care Planning and the ALS Patient: A Cross-Cultural Perspective on Advance Directives 529
I. Introduction 529
II. The Nature of ALS 530
IIΙ. Developing A Care Plan: The Physician-Patient-Family Relationship in the U.S., Germany and Japan 531
A. The Physician-Patient-Family Relationship 532
Β. Respiratory Support and Home Ventilation 536
C. Withholding and Withdrawing Respiratory Support 538
D. The Totally Locked-in State 538
IV. Advance Directives in Cultural Context 539
A. Legitimation of Advance Directives in Law 539
B. Public and Professional Attitudes About Advance Directives 542
C. Making Informed Choices 545
D. Respect for Advance Directives 547
E. When Patients Change Their Minds 549
V. Conclusion 549
Zusammenfassung 550
Additional References 550
Robert S. Olick: A Disease-Specific Advance Directive for Amyotrophic Lateral Sclerosis Patients 553
Advance Directive for Health Care for the ALS Patient 554
Part One: Designation of a Health Care Proxy 554
Part Two: Instruction Directive 555
Part Three: Signature and Witnesses 556
Normative Ethics 559
Margaret Grater / Roger D. Masters: Balancing Altruism and Selfishness: Evolutionary Theory and the Foundation of Morality 561
A. Ethology, Primate Social Behavior and Human Nature 562
B. Evolutionary Theory and the Foundations of Morality 564
C. Biological Foundations of Ethics 567
D. Conclusions: Ethics as Balance 570
Zusammenfassung 571
References 572
Matthias Kaufmann: Ethikbegründung und Ethikanwendung 575
I. Ethik und der Streit ums Moralische 576
II. Angewandte Mathematik und Angewandte Ethik 578
ΙII. Angewandte Ethik und Moralprinzipien in der offenen Gesellschaft 581
IV. Ein Anwendungsbeispiel 584
Summary 588
Gary B. Herbert: John Locke: Natural Rights and Natural Duties 591
I. Self-Ownership 594
II. Locke's Analysis of Property 598
ΙII. Self-Consciousness and Natural Duty 603
Zusammenfassung 612
Werner Greve: Schiedsrichter der Schuld? Die Grenzen einer empirischen Psychologie der Be- und Entschuldigung 615
I. Wovon ist die Rede? 619
II. Erklären oder Verstehen? 621
ΙII. Absicht und Verhalten 622
IV. Willensfreiheit 626
V. Was bleibt? 631
Summary 632
Literatur 633
Recension 637
Gerhard Werle / Thomas Wandres, Auschwitz vor Gericht. Völkermord und bundesdeutsche Strafjustiz. Mit einer Dokumentation des Auschwitzurteils (Jan C. Joerden) 639
Contributors 643
Hinweise für Autoren 647
Information for Authors 649