Integrating Equity Work throughout Bioethics

As members of a neuroethics research group funded by the NIH, we echo the call from Fabi and Goldberg (2022) for greater funding parity between the ethics of specialized medical technologies and broader, population health ethics, especially as they relate to issues of race, racism and health disparities. We appreciate the need for people trained in bioethics to devote more attention to entrenched forms of injustice and their effects inside and outside of medicine (e.g., Wilson 2021; Danis et al. 2016; Hoberman 2016), and for active measures to be taken to diversify the practitioners of bioethics (Ray 2020; Danis et al. 2016).

With the shared aim of addressing and ameliorating structural inequalities and inequities, we advocate for the position that funding directed to projects investigating the ethics of emerging technologies should also investigate and attend to health/healthcare disparities, structural oppression, and legacies of injustice that will inevitably affect and be affected by the technologies in question (Benjamin 2019). Bioethics questions related to the well-funded, or as the authors argue, overfunded, areas of inquiry (e.g., genomics, AI, neurotechnology) must engage with issues of race/racism, gender/sexism, disability/ableism, etc. For example, discussions of AI ethics must include attention to algorithmic bias, diversity of training sets, researcher characteristics, and assumptions about problem formulation and use if we are to have any chance of avoiding a reinscription and retrenchment of existing injustices and stereotypes (e.g., Buolamwini and Gebru 2018; Chase 2020). Similar issues arise in neurotechnology development (Brown and Fink 2020) and go well beyond issues of fair access to future technology, to include questions about problem formulation, measurement, normative assumptions about the standard user, representation in human subjects research, and procedural justice (Thompson 2019; Goering and Klein 2020).

These are examples Fabi and Goldberg acknowledge and support. Their key concern is with the lack of sufficient funding of research into social determinants of health as compared to these technologies, a disparity we too advocate addressing. However, in making their argument, Fabi and Goldberg sometimes seem to frame issues regarding research on structural inequalities grounded in racism and research into developing technologies dichotomously. Our goal is to push back on this either/or framing.

They write: “The importance of research into future ethical challenges that may come into existence as technologies advance should not, however, outweigh bioethical inquiry into the unjust distribution of existing health and health-promoting resources.” Pitting one against the other risks oversimplifying the interplay between these two research aims and overlooking the important collaborative work that neuroethics and genetic ethics must take on in the space between them. We contend that scientists, clinicians, technologists, and bioethicists must ensure that neural and genetic technologies are developed and distributed justly. Further, at least some of those technologies are already part of the existing health resources. Addressing structural inequalities requires continued consideration of the collaborative and productive spaces between the ethics of public health, social determinants of health, and developing technologies.

In our view, it is important to motivate people working in both areas to attend to issues of structural injustice, race/gender/disability oppression, health inequities, and other “social impacts” of their work. Just how that should happen is an open question, but funding agencies are already shifting their funding calls to include such considerations. NIH funding announcements in neuroethics, for instance, now require a Plan for Enhancing Diverse Perspectives (PEDP) (https://braininitiative.nih.gov/about/plan-enhancing-diverse-perspectives-pedp). They also prioritize ethics projects that are deeply integrated with BRAIN-funded scientific research. While this approach importantly highlights the value of deeply collaborative interdisciplinary practice, it also likely means that projects focused on bias or health disparities might not receive funding if the scholars proposing them have not already established a well-developed or promising scientific collaboration. Similarly, some ethics projects that propose to study more broadly relevant bioethics issues (e.g., racial bias in scientific practice, embedded ethics governance) that intersect with but go beyond neuroscience might be deprioritized for funding, in favor of topics that are more narrowly focused on BRAIN-funded technology.

We suggest that treating these issues as separate can create bottlenecks in funding that slow down more integrated research projects. If funding organizations are open to neural (or genetic) tech ethics but consider health justice outside of their scope, the ethics components of interdisciplinary projects may be left underfunded, or entirely unfunded, as they struggle to keep pace with the scientific components of such projects. This can lead to study results—on both the scientific and humanist sides—that are more limited in scope and/or applicability. Figuring out fair methods of directing funding within the emerging technology space to issues of bias, structural oppression, and social impact should be a priority and funding agencies should be proactive in encouraging these collaborations.

Even so, we acknowledge the importance of investing heavily in bioethical research directly targeted to longstanding issues of health disparities and inequities, e.g., in the realm of public health and social determinants of health. These injustices should be all the more weighted for funding, study, and intervention, given their slippery resistance to change. Their lack of novelty, in other words, does not undercut their importance; quite the opposite. Some separate, dedicated funding for equity research may be necessary to displace entrenched forms of scientific thinking and practice, but the impact of this work will have greater reach if paired with embedded efforts at change (even, or maybe especially, in specialized medical technologies with high levels of visibility). The societal entrenchment of racism, sexism, and ableism and their pervasive effects within medicine and public health deserve greater attention and active efforts toward amelioration.