Towards Responsible Germline Genome Editing: Developing a Regulatory Framework Embedding Human Rights. 01/11/2024 - 31/10/2026

Abstract

The research will focus on the regulatory framework on germline gene editing (GGE) in human embryos. GGE represents a revolutionary frontier in genetic engineering, offering great opportunities as it has major potential in terms of preventing hereditary diseases. This potential, the rapid advancement of technology, and advancing insights regarding human rights, prompted scholars to call for a responsible pathway to an effective regulation of GGE (instead of the current moratorium). Regulations are crucial given the impact of GGE on the individual, society and future generations (GGE modifications are heritable). Hitherto a regulatory gap exists and the aim is therefore to provide a detailed proposal for regulation that allows GGE and embeds human rights on research, clinical trials/clinical applications with a view to GGE with therapeutic purpose. First, the current state of science will be investigated. Next, the human rights issues will be identified. The research will then focus on the current regulatory framework at international and national level and regulations from similar matters with established regulations will be examined. This will result in a detailed proposal tailored to GGE that embeds the human rights (right to health, personal integrity, science, life, privacy, human dignity) of the parties (embryo zero, parents, future generations, society) concerned.

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Project type(s)

  • Research Project