Before We Forget its Horrors: When Does Human Genome Editing Not Become Eugenics?

Abstract

Biomedical advances in genomics, particularly the sequencing of the human genome and the subsequent development of a very versatile human genome editing (HGE) tool – the CRISPR Cas9 – have deepened concerns of many over possible eugenic abuses in the deployment of the technology in clinical settings. This is not surprising considering the ignominious history associated with the eugenic movement of the past. This article, using a human-rights focused and theoretical approach, contests the arguments and counter arguments for and against the eugenic goals of HGE, particularly concerning human germline genome editing (HGGE). In doing this, it interspersed the discourse with particularized African perspectives on eugenics and HGE. The article, after establishing the claim of the pursuit of eugenic goals regarding HGGE, goes ahead to offer five suggestions on the implications of these for the design of appropriate legal and regulatory frameworks in response. Foundational is the recognition that law should promote and not stifle innovation. Law, however, should be based on “good science” backed with ascertainable scientific and clinical evidence, not pseudoscience. Likewise, an appropriate legal and regulatory response should consolidate and advance basic human rights including the rights of people living with disability.