Reparative Beneficence: A Queer and Crip Case Against Genetically Determining “The Best Life”

Abstract: Savulescu’s “procreative beneficence” (PB) establishes moral obligations for parents to maximize their children’s best lives through genetic testing. Existing bioethical critiques of PB focus on its philosophical premises and obscure the structural realities of marginalized communities that cause material injustice. Neglecting material injustices imposed onto queer and disabled POC when privileging genetic technologies leaves no room for systemic framings of health disparities. In this presentation, we use crip and queer of color scholarship to synthesize “reparative beneficence.” We demonstrate how marginalized scholarship offers imaginative, non-genetic modes of achieving best lives as opposed to genetic modalities in PB. Reparative beneficence argues that children’s open futures must be realized through creative, collective, and caring obligations that speak back to oppressive and normative health standards, ultimately generating an ethics of care that sustains healthy living. We develop reparative beneficence through a conceptual analysis of queer and crip responses to genetic testing and highlight three core rationales. First, queer and crip scholarship demonstrate how an ethics of care leads to a collective repair of injustices from individualizing ideas of health. Second, crip and queer of color scholarship emphasize that “the best life” is not genetically determined but instead impacted by oppressive structures and social determinants of health. Third, the promise of genetically selected “best lives” given capitalism, ableism, and social hierarchies could never be open to everyone. Reparative beneficence thus supports transformative actions that have greater potential to create best lives and open futures for everyone.

Lorenah Vasquez – PhD Student, Bioethics and Health Humanities, University of Texas Medical Branch, Galveston