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Andrea Boggio and Brian Gran discuss how indicators may be used to monitor realization of the human right to science articulated in Article 15 ICESCR. Measuring the extent of the gap between universally acknowledged standards and implementation efforts of national governments contributes to the realization of the human right to science for different countries at different times. Indicators are widely used to monitor how well states live up to the standards necessary for the advancement of human rights. Following a review of relevant literatures on human right indicators, Boggio and Gran propose a definition of the normative content of the human right to science and identify indicators which can be used to measure the realization of the right. They discuss several challenges and limitations of their approach yet ultimately argue for the utility of indicators. Such indicators can be used to (1) facilitate monitoring of compliance with Article 15 of the Covenant on Economic, Social and Cultural Rights by UN bodies as well as human rights advocates; (2) refine the essential attributes of the human right to science, which are still not well defined; and (3) assist national governments in implementing policies that contribute to the realization of the human right to science.
In the conclusions, the book editors assess the existing national and international regulatory frameworks in the light of the five foundational principles that they identified by reading international bioethics law in conjunction with international human rights standards: (i) freedom of research; (ii) benefit sharing; (iii) solidarity; (iv) respect for dignity; and (v) the obligation to respect and to protect the rights and individual freedoms of others. Their analysis reveals four issues common to most national regulatory frameworks as well as the international framework: (i) The prohibition to create embryos for research embryos cannot be reconciled with the right to science and the rights of science; (ii) limitations to scientific freedom based on vague laws are not truly limitations “determined by law”; (iii) limitations to scientific freedom based on obsolete laws are not limitations accepted in a “democratic society”; (iv) ne plus ultra prohibitions breach the right of everyone to benefit from scientific and technological progress and the principle of benefit sharing. The editors conclude by sketching an international governance framework that promotes science and technological development while being mindful and respectful of international human rights standards, as well as the different sensitivities with which citizens from different parts of the world approach the question of human germline genome modification.
In this chapter, we review the key elements of the larger international and transnational framework within which the national legal regimes regulating human germline genome modification exist. Part I is a quick primer to international law and international human rights for the benefit of those who are not familiar with them. Part II presents the relevant norms of international bioethics law, including three main declarations adopted by UNESCO touching on human genome modification. It discusses also the relevant governance activities of the World Health Organization, Organisation for Economic Co-operation and Development and civil society, nationally and transnationally. Part III discusses relevant international human standards, and in particular the so-called ‘right to science’ and the ‘rights of science’. Finally, Part IV discusses how these rights can contribute to the emerging international regulatory framework. This chapter argues that, by itself, international bioethics law and its instruments provide a narrow and inadequate description of the range of human rights that must be taken into account in the conversation on the regulation of germline engineering. These instruments must be integrated with the broader international human rights law corpus. When they are integrated, five key principles emerge as foundations of the emerging regulatory framework: freedom of research; benefit sharing; solidarity; respect for dignity; and the obligation to respect and to protect the rights and individual freedoms of others.
In this Introduction (Chapter 1), we discuss the science of human genome modification in general, how it relates to human reproduction, and the specific advances that CRISPR/Cas 9 represents and the family of tools it has generated to date. We then explain the methodology we followed preparing this book, including how countries were selected and what we chose to focus on and why.