Balancing Biomedical Progress Against Reproductive Justice in the Case of Human Germline Genome Editing with CRISPR-Cas9

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Authors

Coutts, Lauren

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thesis

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eng

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CRISPR-Cas9 , Bioethics , Reproductive Justice , Human Germline Genome Editing

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CRISPR-Cas9, the Nobel-prize winning gene-editing technology, has been heralded as the biggest biotech discovery of the century. It touts the ability to one day effectively remove mutations from the human germline genome that cause genetic disease and disability. This is said to increase the quality of life of future generations. While CRISPR-Cas9 is often celebrated as the next frontier in genetic medicine, questions of its accuracy, which present important medical risks, is the biggest bioethical hurdle to its clinical utilization. However, there are many important socio-ethical implications of making heritable changes to the human genome that are marginalized from current debates. This is the premise of this thesis. I argue from a reproductive justice perspective that the promise of biomedical progress with CRISPR-Cas9 is misplaced and we are continuing to address social issues with technological solutions. Positive implications of the technology are far outweighed by its potential marginalizing social impact on women and disabled people. Through analyzing CRISPR-Cas9 regulation, which is highly influenced by a thin debate in public bioethics, I show how difficult it is to regulate emerging and transgressive technologies at a global scale and the troubling effects that uneven international regulation already has, seen through the rising trend of medical tourism. This leads me with two concluding questions: who benefits from biomedical progress and at what cost and what does it mean to ‘flourish’ within a social system that increasingly restricts notions of acceptable embodiment through biomedicine?

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