Why and How Bioethics Must Turn toward Justice: A Modest Proposal

Abstract

In this essay, I argue that to create a genomics that offers more gifts than weights, central attention must be paid to questions of justice. This will require expanding bioethical imaginations so that they grasp and can respond to questions of structural inequity. It will necessitate building novel coalitions and collaborations that turn the attention of bioethical governance away from narrow individual questions such as, “Do I consent?” and toward the broader collective question, is this just? What kind of lives and collectivities are made possible? What rights and principles should govern them? The essay ends with one example of this novel coalition building arising from the Science and Justice Research Center at the University of California, Santa Cruz. It draws lessons from this effort to build new alliances that bridge the social sciences and natural sciences, arts and engineering, to create new kinds of training and thinking that create a genomics that more adequately responds to fundamental questions of justice.

The fertility of moral ambiguity in precision medicine

“…Departing from a specific position of individual rights, Morrisey and Walker ( 2018 ) emphasize in their study the imperative to include a social justice perspective, or community rights, on population preventive genomic sequencing to prevent unequal access to precision health. Recently, Jenny Reardon argued how bioethics should prioritize the concept of justice to ensure that society’s moral vision for genomic medicine rests on a collective, inclusive reflection and social responsibility (Reardon 2020 ). Reardon’s article appeared in a special issue of the prestigious Hastings Center Report.…”

“…monetary return) and a self-less service for the promotion of human health. On a different scale, Reardon poses in her article similar concerns when she writes “should a mode of doing research so dependent on speed, technological innovation, and venture capital dominate the life sciences?” (Readon 2020 , p. S72). The entanglement of genomic medicine and venture capital makes the researcher vulnerable for primarily serving his/her personal and/or professional interests, jeopardizing the sharing of knowledge due to competition and the moral fiber of the researcher.…”

Towards equitable and trustworthy genomics research

“…22 Until recently however, questions of justice and genomics have often received comparatively little attention. 23 As a matter of justice, it is fair to expect that the advantages that accrue from scientific discoveries should benefit those most in need and not just the scientifically well represented. Diversity in genomics can contribute to developing just and equitable genomic medicine and efficiently allocating scarce healthcare resources.…”