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