3. Human Genome Project and Human Rights: A Conflict Between Scientific and Ethical Responsibilities
E.R. Martin , A.G. Bansode & P.A. John*
Department of Zoology , Ahmednagar College, Ahmednagar 414 001, Maharashtra
*Institute for Research Development in Environment and Rural Health, 9, Ibrahim Colony, Near G.P.O., Ahmednagar, Maharashtra
The human genome project (HGP) is an international project aiming at obtaining a detailed map of complete DNA sequence of genome of human. The molecular biologists have gained confidence that the chemical structure of DNA decides all aspects of life "Almighty" DNA . Recently manipulation of the gene has been achieved. It is believed that the HGP will pave the way to routinely manipulate the DNA. This may trespass the human right as enshrined in the Convention of Human Rights. The present paper raises some pros and cons of this project in the light of the Declaration of Human Rights.
The HGP and human rights in the application of the biology and medicine as a subject matter of legislation did not yet find a place in the UN or in Indian Law books. The HGP is one of the mega scientific endeavors which is compared to the Apollo space project. The HGP not only bring many dreams came true. It will also lead to the development of useful new technology. The genome project was result of a positive decision based on science before (Macer, 1991). However, there are numerous ethical legal and social impact (ELSI) issues magnified by the enormity of the project . These include privacy and genetic testing, genetic, discrimination, eugenics and genetic determinism issues. The issues of patenting cDNA and other genetic data is as yet not resolved.
The UNESCO International Bioethics Committee is formulating guidelines and an UN Declaration on the Human Genome and Human Rights which will attempt to protect humanity from future abuses of human genetics has been made (see Appendix 1 of the previous paper by Macer). The draft universal declaration on human genome include 23 articles. Each of the articles are divided into 7 headings .
The Convention of the Council of Europe on the protection of Human rights and dignity of the human being with regard to the application of biology and medicine convention of human rights and Biomedicine contains 33 articles in XIV chapters. They include: Head; 1. General Provisions (1,2,3,4), 2. Consent (5,6,7,8,9), 3. Private life and right to information (10), 4. Human genome (11,12,13,14), 5. Scientific research (15,16,17,18), 6. Organ and tissue removal from living donors for transplantation purposes (19,20), 7. Prohibition of financial gain and disposal of a part of the human body (21,22), 8. Infringements of the provision of the convention (23,24,25), 9. Relation between this convention and other provisions (26,27), 10. Public debate (28), 11. Interpretation and follow up of the convention (29,30), 12. Protocol (31), 13. Amendments to convention (32), 14. Final clauses (33,34,35,36,37,38).
The UNESCO IBC Declaration is broad and has broad support of the 186 countries of UNESCO and the same is hoped of the United Nations General assembly. The whole of this draft declaration has been drafted in keeping declaration and conventions which has been the soul for the formulation.
The UNESCO Constitution refers to the democratic principles of the dignity equality and mutual respect of men. Human dignity has been respected in all of the declarations. Also almost all countries have this as preamble of the constitution. With the development in the science and technology particularly in the field of biology and genetics which has a tremendous, impact on ethical studies. Recognizing this aspects, which is very fundamental for the human that these aspects of all human rights have been respected.
The revised Declaration adapted as on 20 December 1996 has made various broad reaching mention of things like coercion , misrepresentation, fraud, undue influence or by bribery. The section c(8) of the Draft emphasizes the Genetic data associated with a named person and stored or processed for the purpose of research or any other purpose must be held confidential and protected against disclosure to third parties. This section in fact deprive the article. The mention of intellectual honesty and integrity in D(10) of draft is doubtful. It does not mention about the undue influence or dominance by the superiors.
The present draft as on 20 December 1996 does not mention anything about the right of information, which is the most important for every human. And anybody undertaking manipulating human genome must account for the individual and individual must have true and unbiased all information concerning his/her DNA. Punishment for misusing or for deviating from the convention such that aggrieved individual should be able to sue the person/Institute where such studies are conducted.
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