by Naomi Scheinerman, PhD
The Biden-Harris Administration has a wonderful opportunity, particularly amidst a pandemic in which bioethics questions and difficult tradeoffs are not in short supply, to resurrect a group tasked to advise the president on “bioethical issues arising from advances in biomedicine and related areas of science and technology.” Created under the Obama administration, and dispersed under Trump, the Presidential Commission for the Study of Bioethical Issues was responsible for numerous reports on topics that included synthetic biology, pediatric research, whole genome sequencing, neuroscience, and the Ebola outbreak in 2014-15. The Ebola report, in discussing the ethics of quarantine and testing placebo-controlled clinical trials during an epidemic, reiterated an often heard call from officials for “transparent public dialogue and deliberation on public health emergency response.” Also reiterated during this more recent year of Covid, this call for engagement is often made in the hopes of increasing compliance with public health goals. While not an unworthy cause, compliance by itself is neither the sole nor even the most effective purpose of engagement. Including disparate voices in public health and bioethics realms is necessary for bettering the public health and moral decision-making outcome itself through the important role that diverse lived experiences can play. Thus, revamping the Bioethics Commission should include not only a convening of experts, but also a robust procedural commitment to public engagement by using mini-public (bodies of randomly selected individuals) deliberation for each of its projects.
Engaging the public, even at the level of the Commission, is necessary for realizing the aims of bioethics, which, as the Commission’s then-chair Amy Gutmann with James W. Wagner wrote, is to articulate a “moral science.” The Commission, as an “advisory panel of the nation’s leaders in medicine, science, ethics, religion, law, and engineering” had a technocratic makeup, and given the necessarily “transdisciplinary” nature of bioethics, it seems natural to have an academic and expert approach. However, democratic deliberative experiments with randomly selected bodies of lay participants have recently revealed increasingly compelling reasons for diverse, representative, and engaged approach to inclusion of people. Not only are people “capable” of deliberating and engaging in difficult or technical risk assessment, but also provide crucial views expert-based groups tend to lack, such as lived experiences.
Through robust participatory mechanisms, offered through the sortition (random selection) process, increasing the diversity and representativeness of institutions can help to mitigate the moral problems of exploitation, domination, and oppression wrought from systemic inequalities and injustices. Bioethics, as a field, should not treat systemic racism, transphobia, and other assaults on vulnerable or marginalized populations as a mere offshoot or specialty within bioethics, but rather situate it at the core of what it is to do moral science going forward. Necessary to that end is cultivating institutional spaces that are diverse and representative in which participants can attest to their lived experiences and interact with experts in a more deliberative forum. Importantly, as well, inclusive deliberation tends to reduce polarization and increase transparency through the robust expert interrogation and communication required. Further, trust is formed when people who look and sound like them, who could be their neighbor or even them, have the opportunity to be heard on matters crucially impacting their lives.
Mini-public engagement also offers the Commission the opportunity to be beholden to the goals they set out for themselves. In the Ebola report, perhaps reflecting what Gutmann as a scholar is known for, the Commission wrote of the importance of deliberation through engagement with the community as core to public health outcomes during epidemic/pandemics: “As a process of reaching consensus for decision making, democratic deliberation is well-suited to public health emergency preparedness because it fosters public spirited perspectives and generates decisions that can be revisited in light of new information and engagement with specific affected communities…. Early public engagement should be based on broad and active involvement of members of the public.” Other models of this have included Danish Consensus Conferences convened by the Danish Board of Technology to weigh in on a range of medical applications, biobanking deliberations in British Columbia in 2008, GMO deliberations in the EU, and ongoing Citizen Assembly deliberations on environmental change in the UK.
This kind of engagement is preferable to other mechanisms of crowdsourcing and soliciting comments as is common in the administrative state. Writing in 2017, Alexander M. Capron, a scholar of healthcare, law, and policy wrote that “Any future Bioethics Commission should use the Internet to provide the public more opportunities not only to follow the Commission’s work but also to offer their views while the Commission is still deliberating. The federal advisory committee process is based on an opportunity for public comment. The Internet has made it possible for a broader segment of the public to offer comments than was the case when the principal means was through attending a Commission meeting and speaking during the time devoted to public comments. Such comments can bring in views that may not have been heard from the experts selected to testify, and they can illuminate points in draft reports that need to be clarified, expanded, or even modified.” My worry with this kind of engagement is it limits the deliberative nature of the body, that it reduces outside engagement to comments that can be selective based on who has time and resources to participate or who is organized most effectively by stakeholders, as has been seen in the other administrative regulatory comment system. However, the internet does indeed offer the opportunity now to more easily include disparate views within the Commission itself as we have witnessed with Citizens panels increasingly pushed online and still succeeding in their deliberations. Thus, my ultimate hope is that through this kind of experiment with the Commission, it will build political momentum also to cultivate engagement spaces, processes, and institutional modifications in agencies and other administrative corners, to infuse the system with this more direct democratic process that can help to equalize power and thus reduce the democratic deficit wreaking havoc on this country.