Biomedical Challenges to Identity and Parenthood: An Investigation into the Ethics of Genetic Technologies at the Beginning of Life

Abstract

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 important features of personal existence and capitulates to the technocratic paradigm. Phenomenologist Edith Stein (1891–1942) postulated a source of individuality from a Persönlichkeitskern, or “personal core,” more fundamental than the human species form. This personal core along with her novel metaphysical category of essential being can contribute to 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 about permissible genetic therapies. Her proposals reveal that, while some types of genetic therapies are permissible, other types of genetic therapies that would interfere in traits that relate more fundamentally to the core of the person—such as in the case of autism—would be illicit. Additionally, a Christian response to the task of countering pressures of the technocratic paradigm requires paradoxical commitments to both safeguard each individual’s purposeful uniqueness bestowed by the Creator and to maintain a level of detachment from identity required for accepting discipleship and the transformative impact of grace. These commitments can be sought through an approach of narrative ethics and a perspective of individual identity as gift.