Editing Humanity: A Disability Centered Approach to Human Gene Editing

Heady, Jana
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Since the development of CRISPR technology, the reality of editing the human genome seems closer than ever. With this technology comes a plethora of ethical questions about the boundaries that should be imposed on this gene editing ability and the impact of this technology on disability communities. To begin to address these ethical questions, it is important to start with an understanding of disability by examining current models of disability, including the medical, social, and theological models of disability. Furthermore, an examination of the application of these disability models to eugenics, physician assisted suicide, and selective abortion can help predict and guide responses to human gene editing. Since this technology was first developed, scientists have been at the forefront in discussing its ethical application. However, this prioritization of scientists has led to ethical horror stories, such as Dr. He Jiankui’s experimentation on human embryos to create the first CRISPR edited children. To best proceed in the exploration of human gene editing, people with disabilities must first be seen as humans intentionally created by a loving God and as valued members of society. Their perspective on human gene editing must be prioritized, or permanent genetic changes that most impact them will be made without their permission.

Disability., Bioethics., Human Gene Editing.