The International Legal Governance of the Human Genome
Published May 11th 2012 by Routledge – 224 pages
Series: Genetics and Society
The human genome is a well known symbol of scientific and technological progress in the 21st century. However, concerns about the exacerbation of inequalities between the rich and the poor, the developing and the developed states, the healthy and the unhealthy are causing problems for the progress of scientific research. The international community is moving towards a human rights approach in addressing these concerns.
Such an approach will be piecemeal and ineffective so long as fundamental issues about economic, social and cultural rights, the so-called second generation of human rights, are not addressed. This book argues that, in order to be able to meaningfully apply a human rights framework to the governance of the human genome, the international human rights framework should be based on a unified theory of human rights where the distinction between positive and negative rights is set aside.
The book constructs a common heritage concept with the right to development at its core and explores the content of the right to development through rational human rights theory. It is argued that the notion of property rights in the human genome should be placed within the context of protecting human rights, including the right to development. The concept of common heritage of humanity, contrary to the widely held belief that it is in opposition to patenting of gene sequences, supports human rights-based conceptions of property rights.
This book fills a gap in the literature on international legal governance of the human genome will provide an essential reference point for research into the right to development, development issues in bioethics, the role of international institutions in law making and research governance.
Part 1: The Human Genome and Bioethics 1. Introduction 2. The Human Genome Project (HGP) 3. Scientific Research : Increasing Inequities and Inequalities 4. International Bioethical Law after the Nuremberg Code 5. The Metamorphosis of Human Experimentation 6. The ELSI Programme 7. Property Rights in the Human Genome 8. Human Rights – Central to Governance of Human Genome Part 2: International Organisations and the Human Genome 9. Introduction 10. UNESCO and Bioethics 11. United Nations and the Human Genome: The Commission on Human Rights 12. World Health Organisation (WHO) Part 3: The Common Heritage of Mankind in International Law 13. The Concept of Common Heritage of Mankind 14. The International Legal Framework for Plant Genetic Resources 15. Impact of the PGR CHM Debate on Governance of Human Genome 16. The Law of the Sea: Deep Seabed Minerals 17. The Elements of the Common Heritage Regime 18. The Moon Treaty 19. Common Heritage and the Human Genome 20. Common Heritage Elements in the Universal Declaration, 1997 21. The Legal Commission debates: Elements of CHM Regime or Isolated Principles? 22. Human Rights and the Human Genome 23. Conclusion Part 4: The Common Heritage of Humanity and the Right to Development 24. Introduction 25. The New International Economic Order 26. The Right to Development and the New International Economic Order 27. The Emergence of the Right to Development 28. The Right to Development and Health Part 5: Human Rights, Common Heritage and Development – A Moral Perspective 29. Introduction 30. Why Gewirth? 31. Gewirthian Theory 32. Principle of G.C. as the Basis of the International Human Rights Order 33. Some Important Concepts in a Gewirthian Analysis 34. A Moral Analysis of the Notion of the Common Heritage of Humanity 35. The Right to Development and Productive Agency 36. Conclusion Part 6: The Common Heritage of Humanity and Intellectual Property Rights 37. Introduction 38. International Law and Intellectual Property Law 39. The Importance of Intellectual Property Rights 40. Intellectual Property Rights and Common Heritage: A Case of Neglect 41. Intellectual Property and Property: Morally Equal Rights? 42. WIPO Policy and the Development Agenda 43. Conclusion Part 7: Conclusion
Chamundeeswari Kuppuswamy is Lecturer at Sheffield Law school, UK. His research interests are international law, particularly governance of new technologies, international human rights, property and intellectual property law.