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22 - Toward a Human Rights Framework for the Regulation of Human Germline Genome Modification

from Part V - Conclusions

Published online by Cambridge University Press:  15 November 2019

Andrea Boggio
Affiliation:
Bryant University, Rhode Island
Cesare P. R. Romano
Affiliation:
Loyola Marymount University, California
Jessica Almqvist
Affiliation:
Universidad Autónoma de Madrid
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Summary

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.

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Chapter
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Human Germline Genome Modification and the Right to Science
A Comparative Study of National Laws and Policies
, pp. 585 - 617
Publisher: Cambridge University Press
Print publication year: 2020

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