How We Got to CRISPR: The Dilemma of Being Human

• Published in: Perspectives in biology and medicine Vol. 63; no. 1; pp. 28 - 43
• Main Author: Garland-Thomson, Rosemarie
• Format: Journal Article
• Language: English
• Published: United States Johns Hopkins University Press 2020
• Subjects: Autism; Autistic Disorder; Child; Children & youth; Children with disabilities; Citizens; Clustered Regularly Interspaced Short Palindromic Repeats; CRISPR; Disability; Disabled Children; Disease; Ethics, Medical; Eugenics - methods; Families & family life; Female; Gene Editing - ethics; Genetic engineering; Genome editing; Humans; Knowledge; Medicine; Mortality; Parents; Philosophers; Pregnancy; Reproductive Techniques, Assisted - ethics; Science; Sons; Suffering
• ISSN: 0031-5982; 1529-8795; 1529-8795
• DOI: 10.1353/pbm.2020.0002

This article considers the existential and eugenic risks of gene editing with CRISPR-Cas9. It brings forward epistemological and phenomenological questions concerning what CRISPR technology suggests about the limits of being human. By illuminating the paradoxical relationship between our "then self" and "now self," it considers the fragility of our individual and collective future-making endeavors. To do this, the article offers an overview of the existential dilemmas facing modern subjects, a history of eugenics and the ideology of health, a meditation on the limits of human knowledge, and an explication of the cultural work of metaphor. It argues for the benefits of human variation for individuals and communities and concludes by calling for an attitude of humility and restraint to guide the development and implementation of humane technologies rather than genetic manipulation technologies that aim to control future outcomes through present actions.