Genomic sovereignty in South Africa: ethico-legal issues
Date
2014-08-27
Authors
Mahesh, Kishen.P.
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Abstract
With the completion of the Human Genome project, advances in bioinformatics, computational biology and scientific techniques, human genetic research has established itself as a leading focus of study for many involved in the biological research world. However with all forms of research comes the relevant ethical procedure to guide these studies. Human genetic studies are especially intricate in their ethics evaluations as not only do they require biological material to be obtained from an individual or group of individuals but it in turns gives a researcher access to one’s own personal genetic code, i.e. DNA sequence. Such information has become extremely useful in identifying predispositions and causative factors for certain diseases, identifying possible phenotypic traits, clues into one’s ancestry as well as the overall potential for commercial gain by pharmaceutical companies in drug and gene therapy research and development through acts of gene patenting. Thus with the biological world completely open to exploitation, the need for various control regulations and guidelines to be further developed to address these issues persists. The main questions addressed in studies such as these are those of ownership - who does the sample belong to - access and benefit sharing should any product be developed from information gathered from these samples, consent for use of these samples outside its intended purpose as well as protection of vulnerable groups for unique genetics studies. There are four main sections in this report. First the concepts of Genomic Sovereignty and Common heritage are discussed. Following this, some philosophical theories of ownership are investigated to provide justification toward the concept of ownership with regard to the human body and international bioethical guidelines are then discussed with regard to research involving samples of human genetic material from population groups. The third section is an analysis of the law with regard to ownership, patenting and benefit sharing from research using human genetic material. The
fourth section synthesizes the information of the previous 3 sections to produce an alternate approach in dealing with research involving human genetic material from population groups.
Description
Thesis (M.Sc.(Med.) (Bioethics and Health Law))--University of the Witwatersrand, Faculty of Health Sciences, 2014.