CRISPR, a Crossroads in Genetic Intervention: Pitting the Right to Health against the Right to Disability.

Shawna Benston

doi:10.3390/laws5010005

Abstract

Reproductive genetic technologies (RGTs), including gene-editing technology, are being discovered and refined at an exponential pace. One gene-editing innovation that demands our swift attention is CRISPR/Cas9, a system of clustered regularly interspaced short palindromic repeats and a protein called Cas9. As CRISPR and other RGTs continue being developed, we must remain vigilant concerning the potential implications of genetic-engineering technology on our interpersonal and legal relationships. In the face of increasingly numerous and refined RGTs, we must maintain the rights of everyone: potential parents, prospective children, and individuals (both living and prospective) with disabilities. For those who wish to become parents, how should procreation be regulated in light of developing RGTs, especially gene-editing technology? What duties do parents owe their children, and when does such a duty attach? What role should RGTs play in parents’ fulfillment of their duties to their children? This article will contextualize the right to health and what I will term the “right to disability” in the CRISPR/Cas9 landscape. The article will then explore these rights in reference to the “subjunctive-threshold” interpretation of harm. Finally, I will argue that RGTs must be thoughtfully regulated, with such regulations taking into account the opinions of geneticists, bioethicists, and lay people concerning both the right to health and the right to disability.

Highlights

The 1997 movie Gattaca [1] explored the -science-fiction prospect of a eugenics program that precipitates a society composed of “valids” and “in-valids”
Protagonist Vincent Freeman must navigate this world as an in-valid, having been born without genetic engineering; his parents regret their decision to forgo genetic intervention and use it to engineer Vincent’s younger brother, Anton
Following a three-day International Summit on Human Gene Editing, scientists have called for a moratorium on germline editing

Summary

Introduction

The 1997 movie Gattaca [1] explored the -science-fiction prospect of a eugenics program that precipitates a society composed of “valids” and “in-valids”. That model is enshrined in the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD), which declares that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” [16] In view of this pronouncement, we might consider speaking of the ADA’s protecting a “right to impairment” rather than a “right to disability”. Shakespeare offers the reassurance that “medical cure or therapy [is not] incompatible with social change and civil rights: rather than seeing these as alternative strategies, it is possible to see them as complementary” [19] He affirms the beneficial coexistence of the important rights of health—including access to medical intervention to create or maintain health—and of disability, including reasonable accommodations delineated and protected by the ADA. I will pose, in closing, a series of questions concerning both the right to health and the right to disability—questions on which the opinions of geneticists, bioethicists, and lay people must be sought in order for CRISPR to be ethically regulated

Gene-Editing Technology Debates

The Right to Disability: A Legal and Ethical Concept

Conclusions