This book explores international governance of the human genome from a human rights perspective and challenges paradigms of property that are entrenched in relevant international instruments.
--- The human genome is a well-known symbol of scientific and technological progress
in the twenty-first century. However, concerns about the exacerbation of
inequalities between the rich and the poor, the developing and the developed states,
and the healthy and the unhealthy are causing problems for the progress of scientific
research. International organisations such as UNESCO, the Human Rights
Council, the European Union, the World Health Organization and the General
Assembly have engaged in developing international law to regulate biotechnology
in the last two decades.
Human rights are central to the debate on the regulation of research on the human
genome. A human rights approach to the governance of human genomic research
would 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.
In analysing the Universal Declaration on the Human Genome and Human
Rights (adopted by the General Conference of UNESCO in 1997), the book argues
for 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.
The Universal Declaration on Bioethics and Human Rights (2005) supports such a
conception of the framework laid out by the 1997 Universal Declaration.
Central to concerns about addressing inequalities in health research are the
notions of property embedded in intellectual property regimes that govern such
research at the national level. 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 understanding 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 and 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.

 

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