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Human DNA: Law and Policy

International and Comparative Perspectives

Edited by Bartha Maria Knoppers, Claude M. Laberge and Marie Hirtle

Human DNA: Law and Policy provides the first international debate on a topic of universal concern. No book has brought together such a diverse range of multidisciplinary ethical and legal expertise on the highly controversial issues surrounding the use, storage, exchange and sale of the very `stuff' of which we are made - human genetic material.
Testing of human genetic material involves a variety of samples (pathological samples, newborn screening samples, samples `leftover' after testing, and research samples), shared around the world. This places consent issues on an individual, familial, and societal level. The comparative and international perspectives presented reveal the transnational nature of genetic studies.
This book focuses on the issues of DNA sampling and testing, consent and confidentiality, banking policies, genetic epidemiology and diversity. Since financial and technological pressures are inextricably linked to human genetics research, commercialization and patents are also examined.
Academic researchers, policy makers and industry will benefit from the learned papers and reports of the discussion, which is rich in diversity of opinion, controversial in the diversity of policy and approaches presented, anchored on scientific facts and yet sensitive to cultural, political and economic differences.

Conceiving the Embryo

Ethics, Law and Practice in Human Embryology

Edited by Donald Evans and Neil Pickering

This volume of essays, together with its companion Creating the Child: The Ethics, Law and Practice of Assisted Procreation (Martinus Nijhoff, The Hague, 1996, ISBN 90-411-0207-8) is the result of a concerted action in the BIOMED programme of the European Commission, which was coordinated by the Editor. Clinicians, lawyers and philosophers explore the theoretical and practical problems presented by the new technologies in assisted human reproduction in Eastern, Central and Western Europe. The central question of the status of the human embryo is examined in the light of recent biological discoveries and cultural and legal dissonance within and between the various countries in Europe.

Health and Humanitarian Concerns

Principles and Ethics


Henryk Leszek Zielinski

The founders of the Red Cross/ Red Crescent Movement proceeded from their involvement in specific experience to develop a series of Fundamental Principles. In Health and Humanitarian Concerns: Principles and Ethics, Dr. Henryk Leszek Zielinski proceeds from experience to Fundamental Principles and back again, providing health professionals with clear guidance for confronting specific problems - including natural disasters, forced feeding, torture, biomedical research and HIV and AIDS discrimination - while simultaneously presenting these medical and social dilemmas in the context of the broader humanitarian principles which underlie the Red Cross and Red Crescent Movement.
Upon reading Dr. Zielinski's book, health professionals will either change their approach to complex humanitarian solutions by following Dr. Zielinski's systematic approach, or they will maintain the same course of action but with a deeper understanding and a firmer commitment to the spirit and the letter of the Movement. In either case, Dr. Zielinski's book is an invaluable guide for all who seek to make a personal contribution to the relief of suffering in the modern world.

Edited by Silja Vöneky and Rüdiger Wolfrum

Since the cloning of human beings has become technically conceivable, a controversial ethical and legal debate on the desirability and admissibility of human cloning has evolved. The issue touches questions from different disciplines, such as biology, philosophy, theology and law. This book, although mainly focusing on the legal problems, therefore tries to find an interdisciplinary approach to this controversial subject. It contains contributions from philosophers, theologians, and a biochemist, as well as from national and international lawyers. In the first part, a philosophical and theological outline is presented by scholars considering the topic from different cultural and religious (Christian, Muslim, Buddhist and Jewish)viewpoints. Subsequently, the biological foundations are explained by leading scholars in this field. The final two parts are dedicated to the legal questions, considering first the situation under German constitutional law and then on the international plane. In the comprehensive Annex, the most relevant documents for the International (in particular from the UN), European and German legal systems are presented.

Creating the Child

The Ethics, Law and Practice of Assisted Procreation

Edited by Donald Evans and Neil Pickering

This volume of essays, together with its companion Conceiving the Embryo: Ethics, Law and Practice in Human Embryology (Martinus Nijhoff, The Hague, 1996, ISBN 90-411-0208-6) is the result of a concerted action in the BIOMED programme of the European Commission, which was coordinated by the Editor. Clinicians, lawyers and philosophers explore the theoretical and practical problems presented by the new technologies in assisted human reproduction in Eastern, Central and Western Europe. The essays reveal considerable dissonance in existing and proposed legislation, both within and between European countries, and examine the rights of parents and children involved in these new procedures.

George P. Smith II

The eight chapters within this volume are structured around an exploration of the fundamental issues in the field of biomedical human rights: dignity and autonomy in not only procreative liberties but throughout the complete cycle of life and death, the freedom of scientific inquiry into the new biotechnological methods of collaborative reproduction, the right to genetic integrity at birth and throughout life, and the equitable right to health or access to health care benefits during life and old age. All these central issues are tested, of necessity, but utilitarian principles which, in turn, force the templates for decision making, evaluate the gravity of harm deriving from a particular human right and its recognition and enforcement measured against the utility of the social, economic, or cultural good accruing from recognition of such a right in the first instance. Ultimately, cultural relativism will be seen - more often than universality - as the determinative point of balance.
This volume not only informs the ongoing debate on the role of human rights in biomedicine, but will also provide enlightened responses to the troublesome issues presented in this new age of biotechnology.

Pilgrims in Medicine: Conscience, Legalism and Human Rights

An Allegory of Medical Humanities, Foundational Virtues, Ethical Principles, Law and Human Rights in Medical Personal and Professional Development

Thomas Faunce

This arrestingly novel work develops a normative synthesis of medical humanities, virtue ethics, medical ethics, health law and human rights. It presents an ambitious, complex and coherent argument for the reconceptualisation of the doctor-patient relationship and its regulation utilising approaches often thought of as being separate, if not opposed (virtue-based ethics and universal human rights). The case is argued gracefully, with moderation, but also with respect for opposing positions.
The book's analysis of the foundational professional virtue of therapeutic loyalty is an original departure from the traditional discourse of patient autonomy, and the ethical and legal duties of the medical practitioner. The central argument is not merely presented, as bookends, in the introduction and conclusion. It is cogently represented in each chapter and section and measured against the material considered.
A remarkable feature is the use of aptly selected "canonical" literature to inform the argument. These references run from Hesse's The Glass Bead Game in the abstract, to Joyce's Ulysses in the conclusion. They include excerpts from and discussion about Bergman, Borges, Boswell, Tolstoy, de Beauvoir, Chekhov, Dostoevsky, Samuel Johnson, Aristotle, Orwell, Osler, Chaucer, Schweitzer, Shakespeare, Thorwalds, Kafka and William Carlos Williams. Such references are used not merely as an artistic and decorative leitmotif, but become a critical, narrative element and another complex and rich layer to this work. The breadth and quality of the references are testimony to the author's clear understanding of the modern law and literature movement.
This work provides the basis of a medical school course. As many medical educators as possible should also be encouraged to read this work for the insights it will give them into using their own personal life narratives and those of their patients to inform their decision-making process. This thesis will also be of value to the judiciary, whose members are often called upon to make normatively difficult judgments about medical care and medical rules.
The human rights material leads to a hopeful view of an international movement toward a universal synthesis between medical ethics and human rights in all doctor-patient relationships.