International Protection of Genetic Information: The Progression of the Human Genome Project and the Current Framework of Human Rights Doctrines
Tauer, Jennifer Elle, Denver Journal of International Law and Policy
The Human Genome Project (HGP) is an international project to sequence and map the human genome as well as to document humanity's genetic resources. (1) It has the potential to impact human rights and public health by creating perpetual structural inequalities in society. (2) Yet despite this impact on society as a whole, legislation on the regulation of information gathered from the HGP is almost nonexistent. The only current instrument in effect that discusses both the human genome and international human rights is the Universal Declaration on the Human Genome and Human Rights (Declaration). (3) The Declaration addresses research on the human genome, the rights of persons concerned, and the duties of states to advance the international dissemination of information on the genome. Since the Declaration deals with the issues of protecting genetic information that will possibly be revealed by the HGP, its implementation is essential to protect the individuals who risk the exposure of their genetic information. However, implementation depends on the will of states and it is up to them to incorporate the principles of the Declaration into their legislation where appropriate. (4) More importantly, the Declaration encourages states without any legislation to legislate within the boundaries established by the principles of the Declaration. (5)
A genome is an organism's entire genetic material (6) and the human genome is specifically all of the genetic information of the entire human race. (7) The HGP is therefore an effort to decode the entire genetic make-up of human beings. Once the HGP is complete and the genome is mapped, sequenced and identified, individual genetic compositions will be knowable. The questions then become: who is entitled to this information, how will this information be used against individuals, and most importantly, will the use of this information violate their human rights? In 1997 the United Nations Educational, Scientific, and Cultural Organization (UNESCO) enacted the Declaration, which takes steps to protect the human rights of individuals with specific regard to genetics as it relates to dignity, rights and research. This Declaration has been effectively adopted by the General Assembly of the United Nations. (8)
In order to properly understand the nature and breadth of this inquiry and what solutions may present themselves, a comprehensive understanding of the HGP is required. This article will discuss the legal and ethical issues surrounding the HGP as well as the shortcomings of traditional international human rights law on this particular issue, including the Declaration and how its implementation will protect the human rights concerns of individuals.
The Declaration needs effective implementation on a state-by-state basis to protect the privacy, autonomy and dignity of individual human rights. However, there is a significant lack of current and uniform legislation throughout the world protecting these rights in local governments. (9) Although there is some national legislation in a few industrialized countries, there are inconsistencies and other countries that have no legislation are being exploited due to their lack of safeguards. (10) Such loopholes encourage international regulation of bioethics by effective implementation of the Human Genome Declaration.
I. THE HUMAN GENOME PROJECT
Before understanding how this issue will exist within the legal framework of international human rights, one must first comprehend the background of the HGP. The HGP is an international collaboration of the world's best scientific minds created to identify the form and content of the human genome. (11) The HGP began in 1988 and is the result of three individuals who independently and publicly proposed to sequence the entire human genome. (12) Robert Sinsheimer, the Chancellor of the University of California of Santa Cruz (UCSC), planted the idea of sequencing the human genome, although it did not succeed in attracting money for a genome research institute on the campus of UCSC. …