A New Approach to Genetic Engineering Ethics: Resources from the Phenomenology of Edith Stein for Investigating the Relationship Between Disability and Identity 
Mariele Courtois, PhD (c), The Catholic University of America

Genetic technologies such as CRISPR-Cas9 render genetic therapies for congenital disabilities increasingly likely. Even if ethical concerns about safety, efficiency, and just distribution could be avoided, there are significant critiques from disability ethics literature for genetic therapeutics. While many scholars rightly question whether some therapies may be driven by a eugenic impetus, an even deeper question from disability ethics surfaces as to whether and when healing a disability can ever amount to thwarting personal identity. Nancy L. Eiesland, Amos Young, and others have challenged the assumption that disability can be removed without changing an individual’s identity. It is possible that, by imposing an ideal of human functionality, genetic manipulation threatens sacred features of personal existence. These theological concerns are challenging to address, especially because many classical Christian authors did not fully confront questions about personal identity. While Thomas Aquinas argued that matter is the source of individuation, this does not clearly reveal how an individual may be recognized as unique before the eyes of God— both in body and in soul. Phenomenologist Edith Stein (1891–1942) postulated a source of individuality from a Persӧnlichkeitskern, or “personal core,” more fundamental than the human species form. This personal core along with her novel metaphysical category of essential being may have important contributions for understanding personal identity in the clinical context. Though identity and individuation are critical for assessing genetic technologies, the insights of Stein on these concepts have not yet been applied adequately to bioethical debates. Stein’s work provides yet untapped resources for confronting questions about the relationship of body and soul to identity for determining permissible genetic therapies.