In this paper presentation, I will critically assess contemporary use of genetic technologies and testing as reinforcing an objectification of human beings that reduces them to genetic data for surveillance and commercial gains. These concerns are especially pressing for marginalized communities who have often borne the brunt of the costs of technological advancement. Genetic data collection often neglects and obscures the needs of communities of color, obstructing them from receiving benefit from genetic testing and data collection. In response to these concerns, I will propose an alternative constructive theological framework for how to employ genetic testing and technologies in a more just way respecting both human dignity and diversity. I will draw primarily from Catholic theological anthropology to illustrate the necessarily relational and interdependent nature of human persons. In particular, I will adopt and modify Alejandro García-Rivera’s aesthetic cosmology that prioritizes beauty, frailty, and entangled relationships across creation to define the purpose of art and technology. Using this framework, I offer how genetic testing and technologies more broadly can and should serve the dependent, fragile nature of human life and human communities, especially the most marginalized.
As it appears today, the datafication of humans based on genetic information in many ways continues a trend within Western medicine of objectifying human life and health according to a clinical and commodifying gaze. From Michel Foucault’s articulation of the clinical gaze to Jeffrey Bishop’s understanding of the corpse as epistemologically normative for medicine, medical history reveals a penchant for healthcare to work on the patient as an object rather than work with or for the patient to promote their health. From this perspective, the patient becomes an object for knowledge extraction and manipulation rather than a full person with dignity. More recently, Paul Scherz’s The Ethics of Precision Medicine helps illuminate the way that genetic data collection for the sake of preventative medicine runs the risk of elevating population risk management over the real, concrete needs of individual patients. As such, genetic technologies contribute to an alienation of patients from their own bodies and personal identities and subject them to the needs of abstract statistical others.
The alienation that can arise from an objectifying use of genetic testing and technologies applies in particularly potent ways to already marginalized communities. For example, Devan Stahl highlights the affinity for genetic screening to reinforce a deterministic and ableist moral project in medicine. This genetic information and determinism allows people to make judgments about the worth of others’ lives, often with a condescending perception of people with disabilities and their quality of life. With regard to ethnic and racial minority communities, health disparities have been re-entrenched in genetic data collection and analysis. In Artificial Intelligence and Healthcare, Natasha H. Williams discusses algorithmic bias and underrepresentation in data for groups like African Americans. Specifically focusing on genetic health data, Constance Hilliard’s Ancestral Genomics sheds light on how the specific needs of marginalized groups like Americans of African descent continue to be neglected by scientific and medical professionals, resulting in still pervasive health inequity. As such, we find that genetic data collection rationalizes the devaluing and exclusion of some communities, such as those with disabilities, while also excluding communities such as African Americans from inclusive practice and valuable health information. These issues are compounded for the many people who occupy multiple intersectional identities. Thus, genetic testing faces the challenges of equitable access, applicability across various communities, and uplifting rather than objectifying human worth.
In response to these challenges, it would be impractical to abandon genetic information, especially considering the already existing and potential future health benefits built on genetics. As such, it will be beneficial to develop a framework for how to use genetic testing, data, and technology in an equitable way with an eye for human dignity to address the concerns arising from our critical assessment of contemporary genetic testing. Christian, particularly Catholic, anthropology’s understanding of the human person as called to communion resituates the patient from an object to an integrated person existing in community. The Christian vision of humanity as relational, dependent, and creative illuminates a different purpose and employment of genetic testing. In particular, Alejandro García-Rivera’s theological cosmology of the garden from The Garden of God reveals a way that genetic technology use can be limited according to inherent human frailty and directed towards a flourishing rooted in the interdependent nature of human life.
García-Rivera’s view of creation and the cosmos begins from a point of beauty. By viewing the cosmos through the eyes of beauty, one discovers that it fundamentally carries the character of a gratuitous gift from God to God’s creatures. Thus, the cosmos and especially human life are gifts of beauty to be appreciated rather than merely objects of understanding and control. Furthermore, this aesthetic perspective on the cosmos suggests a certain simultaneous diversity and unity within creation. As such, relationship comes to the forefront in a way that recognizes that humans come together in interdependence with one another precisely because they share a fragility of life while also relying on each others’ differences. Life for García-Rivera revolves around the entangled bank of life, where diverse creatures live in a particular place defined by both dependency and beauty. This image also points to a telos of life abundant, where humans are gardeners seeking to nurture flourishing within the reality of frailty and interdependent relationship. As such, our art and technology especially should be aimed “towards the entanglement of beautiful living forms” (García-Rivera, 127). In a strong contrast to the use of genetic technologies to isolate and instrumentalize the human person, the technology of the garden works justly with respect for finitude and relationality. In this way, advancement and innovation are welcome to life in the garden, but they must not deny the reality of frailty and relationship. This cosmology then provides valuable tools to critically engage genetic testing in ways that avoid further marginalization by prioritizing an understanding of human life as precious, fragile, and interdependent.
By revealing previously unimaginable knowledge about human bodies, genetic testing and data collection hold the potential to fall into a certain pattern of medicine that views patients as objects to control, resulting in an isolating approach to healthcare. This is a particularly harmful problem for already marginalized groups like those living with disabilities and communities of color. Christian anthropology’s understanding of the human person as relational, dependent, and creative illuminates an alternative framework for the purpose and employment of genetic testing. In particular, Alejandro García-Rivera’s imaginary of the garden illuminates a way that genetic technology can be limited according to human frailty and directed towards a flourishing rooted in the interdependent nature of human life. In short, genetic technology should be employed according to a view of human persons as interdependent, fragile, and relational to serve individual and collective flourishing rather than serve as isolating and controlling.