GENOMICS AND HUMAN RIGHTS Prof.(Dr)T.S.N.Sastry Head, Department of Law University of Pune Pune 411 007 29th December 2008

Introduction 29th December 2008

Introduction 29th December 2008

Introduction 29th December 2008

Introduction The increased understanding of diseases and their causation will have a tremendous impact on the way we identify, prevent, diagnose, treat and modulate diseases. What ever may be the field science progresses, it has to struck a balance between conventional health care methods, and the complex economic, social, Human Rights and ethical issues 29th December 2008

Introduction And at the same time, knowledge has long been viewed to have characteristics that lead it to be portrayed as the “exemplary” public good. Among the various contemporary issues, genomics is timely and very specific issue that challenges the human rights of mankind in more than many ways. 29th December 2008

What is Genomics Genes carry information about physical and functional inheritance vertically between generations that compose of deoxyribonucleic acid (DNA). Genetics is the study of these genes to determine physical characteristics or roles in diseases or individual physical characteristics 29th December 2008

Genomics… Genomics is the examination of an organism’s entire (30,000 to 40,000) set of genes and their interactions in a comprehensive manner. Genomics is thus primarily concerned with the generation, dissemination and utilisation of genetic attributes of organisms. 29th December 2008

The Human Genome Project The success of cloning animals led the scientists to establish a massive HGP in 1990 under the chairmanships of Dr. Wattson. The announcement of successful identification of the blue print of life by scientists many issues came to light, such as racial problem, benefits and risks of genomics, moral, ethical and social, legal and human rights issues 29th December 2008

Benefits of Genomics Genomics has the capacity to increase the ability of medicine to diagnose, treat and prevent genetic disorders. It can rectify the flaws in genetic disorders. It is helpful to cure common diseases, like malaria, cancer, T.D.,, etc. By producing genomic products, States are the direct economic beneficiaries 29th December 2008

Problems of Genomics Highly expensive and may not be possible for developing States It’s role in health sector is far from clear It may look like a potential technology to over come the disabilities created by nature, but it may create a potential danger especially in vulnerable groups. Super eugenics may be created as in the past 29th December 2008

Problems… IPR and Patent aspects may block the knowledge in immediate common use of the nation-states The IPR legislations across the world need to be amended especially in the patent area. May bring in Health inequalities, financial division across the society. 29th December 2008

Human Rights and Genomics HR is always the tool to regulate all the impacts that have a bearing on international law . At the same time caution is necessary, that HR may not be able to provide all answers to potential issues raised by society. They bring in focus on the latest issues which ultimately evolve solutions either socially or legally in a orderly fashion. 29th December 2008

Human Rights Mechanism There are more than one hundred Declarations, Covenants, Conventions have been adopted by the comity of nations since 1948. Among the various texts, the UDHR, ICCPR,ICESCR, CBD of UNESCO1992, Universal Declaration on Human Genome and Human Rights 2005,by UNESCO are highly important 29th December 2008

Biological Diversity Convention 1992. This is comprehensive convention with 42 articles and two Annexes . Annex I deals with identification and monitoring of Human Genome Annex II deals with the dispute resolution between nation states through arbitration. The Uniqueness of the Convention is that no part of it could be reserved 29th December 2008

BDC Out of 191 signatories more than 150 states parties have ratified it. On the one hand it recognizes the sovereign equality of states and supremacy of national legislation and on the other it imposes obligation on the states to share the transfer of information and technology to minimize the impact of human cloning. 29th December 2008

BDC States parties are free to regulate the research in this area without inconsistent with the philosophy of international law of human rights. All states are under an obligation to establish monitoring mechanism to regulate Biological Diversity of Genomes and Genes. 29th December 2008

Universal Declaration on HG and HR 1997 This was adopted by UNESCO in 1997 and later adopted by Genera Assembly in 1998. It has 25 articles in seven parts. Part I deals with human dignity and human genome (Arts. 1-4) Part II deals with Rights of patients of gene therapy (Arts 5-9) 29th December 2008

Universal Declaration…. Part III deals with research on human genome. Bans Reproductive human cloning (10-12) Part IV Imposes conditions the manner in which the scientific activity to be carried out (Arts 13-16) Part V impose obligation on states to share and disseminate the knowledge (17-19) 29th December 2008

Universal Declaration… Part VI expects the ideals of the Declaration to be carried out (Art 20-21) Part VII impose obligation on the states to take steps to cooperate with the Bioethics committee of UNESCO (Arts 22-25) 29th December 2008

Universal Declaration on Bioethics and Human Rights 2005 The main objective of the Declaration is to regulate the ethical issues raised by medicine, life sciences, and other association technologies which are applied in the Human Genome Project. The Declaration reiterates the significance of human rights and human dignity. It has 28 Articles divided into V parts. 29th December 2008

Universal Declaration…. Part I deals with the general principles dealing with the scope and aims (Arts1&2) Part II lays down around 15 principles to be respected while conducting HG Research (Arts 3-17) Part III deals with the application concerning decision making and addresses the issues of bioethics(Art18-21) 29th December 2008

Universal Declaration…. Part IV again reiterates the responsibility of the States in the promotion and protection of research (Arts 22-24) Part V permitting the states to regulate the research in this area and to enact legislation without inconsistent to the principles of international law, human rights and the Declaration (Arts.26-28) 29th December 2008

Ethical, Legal and Social Implications of Human Genome In 2002 the WHO has framed a number of ethical regulations on the title Genomics and World Health. According to the principles member states must cooperative, disseminate information and educate the people about the positive and negative aspects of Genomics and teach them Objectives of Human Rights 29th December 2008

Ethical and Moral….. No State should violate the provisions of ICESCR especially the cultural rights and the rights to information. The states while promoting Genomics should bare in mind the possible outcomes too that affect the balance between Science and Human Rights 29th December 2008

ELSI… Promote just, equitable affordable access to genetic tests, diagnostics. Should reduce risks It should empower the vulnerable people Educational modules to be developed 29th December 2008

Conclusion HG is a welcome feature, as long as it is not in contradiction to the normal natural process of evolution of mankind. Many states including India and US and UK banned Human cloning is a welcome feature in upholding the principles of international law and human rights. Overdoing any thing will lead to automatic destruction. 29th December 2008

Thank you All 29th December 2008