ELSIcon2022 • Panel Session 17 • June 2, 2022
Melissa Creary, Kadija Ferryman
ELSI has had to contend with the ways that the field has and has not adequately attended to race and racism. Patricia King wrote in 2004: "American bioethics has tended to focus its attention on ethical issues associated with scientific and medical advances without recognizing that these developments occur in a social context that must be taken into account if the ethical issues are to be adequately addressed." She reiterated this sentiment in her 2021 remarks titled Racism, Inclusion and Justice: Interrogating Bioethics for the Annual George W. Gay Lecture in Medical Ethics. Histories of and ongoing oppression run deep in the US and globally and many scientific and medical justice projects have been increasingly designed to attend to these wrongful harms. Though these projects may be steeped in normative values such as compensatory justice, many are still inadequate in the ways they understand and account for the deep influence of historical and societal context. Attempts at distributing justice, specifically to those disadvantaged by racism, without addressing the underlying social inequalities embedded in the individuals and communities they are designed to impact is an example of bounded justice. Creary's (2021) concept of bounded justice highlights how health justice efforts can do little in the face of deeply rooted oppression, as fundamental, widespread social reorganization is necessary to even begin moving towards the river of justice. Begging for a further elaboration of bounded justice in genomics, this panel then takes up the framework to consider the relationship between incremental and revolutionary change and what this means for the genomics world. This panel proposes to further explicate the concept of bounded justice through three case studies which include the politics of attention in genetic technologies for sickle cell disease, the FDA’s efforts towards regulating precision medicine-based artificial intelligence in the name of justice, and conceptions of ethical problems and solutions amongst members of the US private sector genomics industry.