Public Engagement Through Inclusive Deliberation: The Human Genome International Commission and Citizens’ Juries

Abstract

In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a “Citizens Jury” in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing’s next summit scheduled for March 6-8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest to offer moral guidance on gene editing. In examining evidence from the Australian Citizens’ Jury on Genome Editing convened in 2021, I argue that Citizens’ Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows “the people” to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens’ Assembly, both more likely to occur and more influential on policy. Second, Jury’s diverse composition promises substantive contributions to the Commission’s work. Third, Citizens’ Juries could help to cultivate the Commission’s trustworthiness.

On September 3, 2020, the International Commission on the Clinical Use of Human Germline Genome Editing, convened by the U.S. National Academy of Medicine, the U.S. National Academy of Sciences, and the U.K.’s Royal Society, released its second of three planned reports - “Heritable Human Genome Editing” (HHGE) - in which it maintained that before any clinical use of genome editing, “there must be widespread societal engagement and approval, and the establishment of national and international frameworks for responsible uses” (150). As in other reports on gene editing, and in the wider bioethics literature, the Commission’s pronounced support for “public engagement” detailed that “societal discourse” is necessary both to educate the public around a wide array of topics related to genome editing and to foster “transparency and accountability” (150). And because the Commission further articulated that it was beyond their mandate to actually conduct this societal discourse, or even envision how to do so, they encouraged social scientists to recommend “how to undertake social engagement, how to engage diverse views, and how to support and sustain such efforts at national and international levels” (150).

Echoing its 2017 report, the Commission’s call for public engagement is also consistent with recommendations from similarly positioned institutions such as the National Academies of Sciences, Engineering, and Medicine (2016), the Nuffield Council (2018), and the World Health Organization’s Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing (2019). To date there have been “more than five dozen… other, similar reports about the ethics of human germline genome editing” (Cohen, Sherkow & Adashi 2022, 10), from various institutions around the world, most of which also express interest and support for some form of public engagement, social dialogue, or democratic participation. And while some provide guiding values and thoughtful discussion on the merits and challenges of normal engagement mechanisms, such as townhall meetings and comment periods, none endorse or provide a clear institutional vision going forward for how best to involve the public. For example, in the National Academies of Science report from 2016, “Gene Drives on the Horizon,” which contained the most thorough treatment of the value of public engagement, the authors acknowledge that they “did not attempt to prescribe a single method of engagement for gene drive applications, but rather, aimed to provide considerations for responsible practices…” (141).

This routinized practice of commissions reiterating calls for public engagement without follow-through could backfire. In referencing the Commission’s HHGE report, Jackie Scully, a member of the Commission itself, wrote: “gesturing towards comprehensive public involvement in decisions about HHGE is laudable. Unfortunately, the ritual invocations in reports like these often give the impression of either being a performative duty, or revealing extreme naivety about the real complexity of the kind of public engagement needed” (2020). If robust engagement does not happen, or is too long delayed, she warns, “meaningful policy participation will be replaced by a tokenistic democratic exercise; perhaps better not done at all.”

In response to these reports and declarations, researchers have proposed different visions and justifications for public engagement on gene editing (Iltis, Hoover & Matthews 2021). In perhaps the most concrete institutional proposal, John Dryzek and colleagues (2020) endorsed convening an international Citizens’ Assembly, a body of randomly selected lay participants, charged with addressing such questions as “Should there be global principles for the regulation of genome editing technologies?” (1435) and producing a report that would, ideally, influence future legislation as well as spark “broader informed participation” (1436).

While Dryzek et al’s proposal offers a promising opportunity in providing a productive institutional mode for public engagement in genome editing decision-making, a Citizens’ Assembly would also occur only after the Commission’s experts have done significant foundational and conceptual work in shaping the goals, evidence, and values at stake. Instead of demarcating separate institutional moments for non-expert and expert-based deliberations, a systemic approach to democratic engagement invites us to imagine multiple models of participation and mechanisms for diversifying institutions of power. Rather than rely on a one-off opportunity, or worse yet, none at all because of the danger that Scully identifies, creating various kinds of deliberative settings will cultivate a more substantive and informed outcome that is truly reflective of the people’s views.

To aid in the goal of capturing an informed public judgment on human genome editing, I propose that at the next (and third) Human Genome Editing Initiative international summit, scheduled for March 2023, the Commission should be held accountable to its own declarations by including in both its deliberations and final report’s recommendations, the influence and work of a Citizens’ Jury. While the Commission’s Citizens’ Jury should deliberate at the same summit, it should be in a separate space so that they would not be overly influenced by experts (Maia, Laranjeira, & Mundim 2020). Further, the Commission should be beholden to the findings of the Jury by, at the very least, incorporating their views into their own report and document. The Jury should be selected to attain a diversity of views on gene editing and its participants paid and childcare provided to reduce barriers to entry.

Citizens’ Juries, and Citizens’ Assemblies, are “mini-publics” – deliberative bodies of lay participants that aim to act as proxies of the people through a process of random selection and the use of moderated deliberation (Curato et al 2021). They are intended to provide idealized conditions in which the people can “think” (Fishkin 2018). In other words, given adequate time and resources, what considered judgments would lay participants reach? As Jackie Street and colleagues (2014) write in their review of Citizens’ Juries in health policy decision-making, these mini-publics “permit citizens to engage with evidence, deliberate and deliver recommendations on a range of complex and demanding topics… provided the research question is tightly defined and concrete in nature, even brief one-day citizens’ juries can deliver useable outcomes to inform policy and practice” (6). For example, they have been used as effective tools of agenda setting in biobanking (O’Doherty & Burgess 2009), genetic testing (Bennett & Smith 2007), genetically modified foods (Timotijevic & Raats 2007), resource allocation (Abelson et al 2007), and other healthcare and biotechnology related areas (Street et al 2014).

In June of 2021, the Australian Citizens’ Jury on Genome Editing, comprised of 23 “ordinary” individuals selected for diversity of views on the promise of scientific progress, deliberated for four days, and provided a series of recommendations on HHGE. The results of the deliberation revealed “a substantive transformation of positions, tending toward greater interest and acceptance of the technology” (Participant Recommendations and Preliminary Report, ii) while still allowing for plurality of ideas.

Examining the evidence from the Australian Citizens’ Jury reveals that a Citizens’ Jury’s considered judgments in a final policy guidance by the Commission would serve three main purposes. First, agenda-setting, a core facet of democratic power, refers to the ability to inform priorities in resource allocation. Thus, it is connected to distributive justice considerations because the agenda will determine what matters, communities, or individuals receive support or funding, and who or what do not. Convening a Citizens’ Jury at the Commission level also therein helps to create political precedent and goals for a downstream Global Citizens’ Assembly to consider. Second, cultivating a more diverse group of lay participants could enhance the epistemic merits of the Commissions’ findings. Individual experiences and cumulative wisdom of the deliberative group add needed diversity of thinking to inform the expert-based group’s risk-based analysis. And third, Citizens’ Juries help to increase the trustworthiness of the institution in which they are situated, a crucial moral and political aim for public health and medical ethics-based institutions.

Agenda Setting

Agenda setting refers to power to dictate prioritization. It is the ability to determine what gets attended to first and foremost, and what, subsequently, does not. It thus requires an assigning of values to various possible outcomes given limited resources. I argue that earlier public engagement and participation in Commission-level deliberations and decision-making helps both to curate the agenda of Dryzek et al’s Global Citizens’ Assembly (such as what moral questions get addressed) as well as to build the political capital required to make such an innovative deliberative event possible. Giving people agenda setting power at the level of the Commission mitigates this risk by cultivating the kind of trust required of public health and ethics institutions, as will be more deeply explored later on.

Insofar as the job of the Commission, as well as other leading governing institutions such as the World Health Organization, is to create precedent for future policy decision-making, the Commission holds significant agenda setting power. Of fundamental importance to any concept of democratic rule, “agenda setting” refers to a kind of upstream triage operation that determines what gets morally scrutinized or funded, and what does not (Citizens’ Initiatives in Europe 2012). The capacity for establishing the goals and priorities of those who ultimately make decisions and address matters of moral importance often has significant impact on the substantive outcomes. As Iltis, Hoover, and Mathews (2021) argue: “In order to successfully develop public policy, [public stakeholder engagement] must be conducted effectively and thoughtfully, being as inclusive as possible to obtain the often numerous and divergent views found in a pluralistic society. Otherwise, it runs the risk of missing major public questions and concerns or not defining the appropriate issues related to the technology” (3).

One of the most important roles of public inclusion emerges in this moment of determining priority because it requires a robust value-based process, such as in “defining the appropriate issues” (3). Indeed, the Commission itself recognized that the comments submitted by the public contained the seeds for future deliberations, writing that while the “question of precisely how such discussions should proceed was beyond this Commission’s charge… presentations and submissions to the Commissions’ call for evidence emphasized a number of additional points to inform future deliberations” (146).

Lessons from past reports reveal that substantive work done early in the policy-making, or at least the moral-limits defining, process also potentially delimits the possibility of later engagement because it is seen as less valuable or necessary. For example, Eric Juengst (2017) critiqued the National Academies of Science, Engineering, and Medicine’s Expert Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations’ 2017 consensus report for both creating a substantive restriction on use of germline editing while also calling for “robust public discussion of human gene editing” (21). He argued that “unless the report’s claims to fame – its permissibility criteria for germ-line trials and its sequestration of enhancement uses of gene editing – are meant to be open to renegotiation during the public dialogue, then the public engagement effort that the report prescribes will be hollow” (21). In other words, why engage the public if decisions have already been made? Juengst goes on to write that “there is no point in engaging the crowd to weigh the values that should inform risk-benefit assessments for germline trials if that door remains locked by the impossibility of developing an oversight system that can prevent enhancement uses” (21). Calling for public engagement then may seem more of a performance rather than a sincere interest in what others have to say. And given the potential influence that the Commission will most likely have on subsequent public opinion, deliberation, and ultimately policy and law (Howell et al 2018), the imperative for imagining what shapes the content of these recommendations is morally and epistemically crucial.

Part of the importance of agenda setting power is not only the substantive questions that will be addressed, but also the manifestation of the political will required to create new and innovative political institutions as spaces for engagement. Citizens’ Assemblies, and other novel mini-publics that are granted (or more significantly, ceded) power from existing institutions, require significant political capital and social resources not only to be convened, but also to be taken seriously, or even as legitimate. This means that they are treated as true interlocutors in the political ecosystem around policy decision-making (Landemore 2015). In other words, a mini-public requires a certain kind and amount of precedent, support, and attention to be seen as legitimate by both those with power to make the decisions and to give them voice in the first place, and by those without power (Pow 2021).

In creating a precedent of deliberative and diverse inclusion at the level of the Commission itself, the Commission’s ability to determine a downstream agenda is more likely. As with many instances of power redistribution and inclusion of those normally without power (aka a subset of the people), politicians and those that already hold power are more likely to reduce their control over something if they see it as in their interest (Dahl 1998). In the past decade, Europe has seen a large growth in the number of and support for Citizens' Assemblies in many different situations and for different policy creating goals (Pilet et al. 2022). “However, many warn that Citizens’ Assemblies could also be used as pawns of politicians in an attempt to check the box on public engagement, rather as sincere attempts to cultivate wisdom from the people (O’Leary 2019).”

With proper agenda setting and precedent creation, the resulting Citizens’ Assembly’s questions would be more reflective of what the public is interested in discussing rather than of the companies, industries, and other stakeholder groups that have more visible representation and potentially captured influence. In the case of Iceland, a Citizens’ Assembly was called for reforming their constitution, and the legislature was legally obligated to be beholden to the findings of the Assembly. Nevertheless, when the findings clashed with political interests of some in the legislature, the suggestions were not taken up (Landemore 2015). Political will is an essential ingredient to growing the kind of perceived legitimacy of these groups, and the precedent of active inclusivity can help further in the quest of engaging citizens more robustly through mini-publics rather than disregarding their contributions.

Agenda setting power also creates what democratic theorists refer to as “scaling up” effects wherein the deliberative “successes” translate to or are carried through to the outside/wider public sphere (Niemeyer & Jennstål 2018). One such way this is done is through spreading awareness of the important role that people can play in a political system that often excludes them, which encourages more sincerity and compassion in listening to one another, which will be explored in the section on trust. And an important effect of this is the way it can reach downstream deliberative assemblies.

Gene editing lends itself well to the kind of public inclusion at the level of the Commission because agenda setting power is easier to establish around issues that are non-polarizing or have not yet divided the public along political party lines (Birkland 1998). On the matter of gene editing, many people feel concerned or fear potential improper uses of gene editing, while others are optimistic as to its therapeutic benefit (Delhove et al 2020). Further, even if the public were highly stratified going into the deliberation, individuals who participate in deliberation are often able to change their views by learning from one another, (Grönlund, Herne & Setälä 2015). In a DNA-dialogue project that took place from 2019 to 2020, Houtman and co-authors (2022) found that many “Participants reported that dialogue participation increased their knowledge and awareness and provided them with a better image and understanding of the arguments and opinions held by others” (6). This was achieved via the sharing of personal experiences alongside exchange of arguments: “participants also indicated positive experiences with hearing perspectives of others. This broadened their own perspectives and increased their understanding of other people’s opinions” (5).

Indeed, it is still possible to reach greater understanding on policies even on the most polarizing of topics by reducing the gap of disagreement amongst deliberation participants (Bächtiger & Dryzek 2019). By reducing polarization, individuals can converge on more agreed upon principles than they could have outside of the institutional space. In perhaps the clearest example of this, in Ireland, a predominantly conservative Catholic country, a Citizens’ Assembly paved the way to legalizing abortion and same-sex marriage, famously polarizing and stigmatized topics (Devaney et al 2020).

Much of James Fishkin’s work on Deliberative Polls, a mini-public with a similar structure to Citizens’ Assemblies, has been to show that “learning” happens in these deliberative environments (Fishkin 2018). Deliberative engagement is a prime opportunity for participants to gather with little or no prior knowledge, or even with certain preconceptions, and to then engage with experts, participate in moderated deliberation. Therein, they often alter their views based on their conversations with and stories shared by other people of divergent lived experiences (Mansbridge 2010). This, I offer, is the heart of democratic discourse, and what takes a deliberative process from stable to flourishing.

Substantive Contributions

Not only, then, does deliberative mini-public engagement matter for political reasons, it also has moral and substantive importance in shaping the resulting recommendations. In this section, I argue holding a Citizens’ Jury in parallel to the Commission’s deliberations at the next summit could benefit the substantive guidance of the final report. I show this by comparing the 2021 Australian Citizens’ Jury report on gene editing with the Commission’s own findings. In so doing, I argue that their points of agreement reveal that the “ordinary” person can indeed, as Fishkin showed, understand technically difficult and morally complicated matters. And second, the points on which they disagree, shows us that there is an important substantive space for lay contributions to the gene editing debate.

The composition and charge of ethics commissions and committees often reflects a view of authority wherein certain qualifications or knowledge justifies one’s ruling on complex matters of governance, such as issues around technology, science, and medicine. The International Commission relies on technocratic authority that, by design, functions to bolster the voices of experts over those of non-experts. What it is to be an expert is often seen through a traditional merit or qualification-based lens (Burris 1989). The Commission’s members, as such, are academics and scientists who primarily work in the life sciences (especially genetics) or are doctors working in bioethics and medical law.

Non-experts, in contrast, are seen as lacking the training or cognitive disposition toward science policy. This epistocratic outlook also entails a kind of “scientific paternalism” wherein expert-based rule is “incompatible with and suspicious of public participation” (Adashi et al 2020, 435). Within these conditions, public engagement has a very specific and constrained role, often segmented from the work that experts do (Lidskog 2010). Sometimes it is even seen as in opposition to it insofar as the public may distrust or disagree with expert findings (Neville & Weinthal 2016). This has been a common thread, indeed, in the genetically modified organism discourse wherein the public holds intense distrust for experts, and the experts, in turn, for the public (Funk 2019).

However, mounting evidence from the world of deliberative democracy reveals that lay participants help to create better informed and more reflective bodies of people due to their “diversity bonus” – diverse groups are better at problem solving than homogeneous ones due to creative or “outside the box” thinking (Page 2017). Consider that the International Commission reflects an interdisciplinary and international collaboration amongst experts. The same logic of diversifying skill set applies, only takes into consideration a broader range of standpoints and experiences in the world. Increasing the deliberative element and the diversity of participants allows for diversity of opinions, healthy disagreement, and cultivates trust in the outside world looking to also engage in these conversations on gene editing technology.

Participant deliberation in mini-publics strengthens the considered judgments of the hosting or convening organization by enhancing the experiential and identity-based diversity of the group. It does so by adding needed diversity within an expert-based organization by supplementing with views that are more informed by experience rather than more traditional conceptions of merit (Moore 2016). Thus, in contrast to other kinds of arguments that support engagement as educating or informing the public, my approach holds that the people can also inform experts, and that their inclusion in deliberations offers a valuable insight into the risks and benefits of technology.

Using a deliberative group of lay people is important so that the people who are going to be most affected by a technology can have a say in its governance. Denmark’s Board of Technology realized this when in the 1970s it began convening “Danish Consensus Conferences” as modes of harnessing public views on various technological questions. Like Citizens’ Juries, consensus conferences featured an attempt to capture the views of people who may be most affected by technology. They involved a pool of pre-selected individuals for demographic representation who deliberated with experts to find consensus on various topics, including human genome mapping, genetically modified food, and genetic testing (Tracking 2013).

Citizens’ Juries are similar, but offer the advantage of creating separate deliberative spaces for lay participants to convene and allowing for disagreement to inform their final product. While learning from experts is an essential part of every mini-public, too much priming and biased influence may dampen the kind of contribution we hope lay participants will add. This separate deliberation, then, creates the right kind of space for “productive power” (Curato, Hammond & Min 2019, 35) in that it harnesses the greater cognitive diversity amongst citizens (Landemore 2020). In this case, it should be done in parallel to the deliberations of the International Commission at its 2023 summit.

Diversity of lived experiences and ideas are essential elements to technological oversight and risk analysis in part because of the limitations of more homogeneous groups (Bohman 2006). Expert groups are prone to silo effects, wherein participants have a myopic or standardized view of things, and thus are limited in imaginative outlook, homogeneously reflective of a dominating group or social narrative (Tetlock 2005; Fisher 2009). This becomes particularly pronounced when evaluating risk, a necessarily value-based concept. Calculating risk, which can indeed involve some quantitative tools, is high socially contingent, and can depend on standpoint, such as experiences of racism or disease or inequality. Non-experts add creative and reflective views sometimes missed by experts (Hong & Page 2004).

Even when the group of experts have descriptively diverse identities, expertise as the requirement of entry still limits the full range of thinking and lived experience valuable to understanding social impacts of new technologies (Jasanoff 1990; Emmerich 2009; Arksey 2008). In a study in the Netherlands on participation in pharmaceutical regulation on pandemic influenza and HIV, researchers compared deliberations between an expert group and a hybrid expert-non-expert group, and found that “in situations of fundamental uncertainty, democratic monitoring of pharmaceutical risks can contribute to the system's robustness” (Meijer, Boon & Moors 2013, 696). Because of the challenge of uncertainty, the role of evaluating risk, and the different kinds of “tacit knowledge” (Collins 2010) that citizen participants contributed, expert groups can benefit from a more diverse arrangement in their regulatory decisions. This becomes particularly important in an area like gene editing, with significant uncertainty and variable risk, such that even experts disagree on reasonable issues and given incomplete information (Lane 2014).

The substantive argument, then, more specifically, is that when the Commission incorporates the views of a Citizens’ Jury, its resulting recommendations will benefit from greater reflection of divergent lived experiences and identities. In particular, the Australian Citizens’ Jury on Gene Editing (ACJ) provides some insight as to the quality of deliberation they could contribute to the Commission’s substantive guidance. In comparing the Commission and ACJ reports, I argue that where they agree, we can see that the people are indeed capable for high-level deliberation and where they disagree, we can see an important view that the experts missed.

First, both the Commission and ACJ reports agree that we should only edit for therapeutic rather than enhancement purposes, that editing the germline should only happen when we lack viable alternatives, and that disability rights voices should be heard.

In the case of enhancement, ACJ details: “We recommend that HHGE be limited to circumstances where it might assist people to have healthy, genetically related children. In other circumstances, particularly the application of HHGE for human enhancement, the prohibition on HHGE should remain” (17). Similarly, the Commission notes that “there is insufficient knowledge to permit consideration of genome editing for other purposes, including nonmedical traits or genetic enhancement, because anticipated benefits in one domain might often be offset by unforeseen impact on risk of other diseases. Moreover, for those latter purposes the barrier to social acceptability would be particularly high” (7).

Next, for ACJ, participants articulate that prospective parents should be alerted to the “availability of alternatives,” noting further that there was disagreement in the group about whether parents should be permitted to refuse any treatment on behalf of their children if its application could be of a significant clinical benefit” (18). Similarly, in the Commission’s report, they specify that the use of HHGE should be limited to situations “in which prospective parents (i) have no option for having a genetically-related child that does not have the serious monogenic disease… or (ii) have extremely poor options” (100).

Lastly, ACJ articulate a clear interest in “community consultation” particularly for those who are directly affected with “inherited disease or disability” (18). Similarly, the Commission’s report also emphasized that “it is critical to engage directly with people who have conditions that might be considered for HHGE” and that therein the views “among genetic disease and disability community members differ” (147).

The ACJ and Commission reports differ on how to prioritize certain diseases and cases in clinical applications. For ACJ, priority should be given according to the “severity of the disorder or disability (such as life-threatening conditions), and the number of people affected should be considered” (18). The Commission, in contrast, prioritized safety over severity: “One overarching principle that guided the Commission in identifying circumstances for which a responsible translation pathway could be defined was that the highest priority should be given to safety, with any initial uses offering the most favorable balance of potential harms and benefits” (9). They later expand on this to articulate that “efficacy” (11) is an important part of this goal.

Herein we can see the important nuance ACJ adds to the question of prioritization: how do we balance the competing needs of addressing need with safety? What sort of trade-offs does this encounter? This offers a pathway forward for thinking through what issues need more resolution and how a Citizens’ Jury can help weigh in at the next summit, or at the very least, how they can help to shape the agenda of a Global Citizens’ Assembly, whose goal is to “propose global principles that will shape how this controversial technology will be used today and in the years to come” (“The Issue” 2022).

Trustworthiness

Even if substantive goals were not attained, including lay participants in discussions on how to weigh values and evaluate risk can help the Commission to develop trusting relationships with the broader public. Closely related to the goal of growing political will is cultivating institutional trustworthiness. Increasing the trustworthiness of institutions is an essential task because it betters the institutions’ capacity to enhance welfare outcomes. The ACJ report warns that institutional innovations for inclusivity such as mini-publics are crucial in the process of engagement because the “alternative is to risk polarization and distrust, affecting the application of all forms of the technology” (ii). The Commission’s report similarly acknowledges that some communities experience a “legacy of mistrust of the medical establishment” due to “past unethical and abusive medical conduct” (147). Indeed, trust is needed generally for a healthy functioning democracy, particularly one that is experiencing a crisis of trust (Sucher & Gupta 2019), and especially in biomedical and health contexts where being able to trust medicine and technology has direct impacts on flourishing (Buchman, Ho & Goldberg 2017). Thus, in this section, I argue that enhancing the Commission’s trustworthiness is a desirable outcome in itself, and one that can be aided through a process of societal dialogue facilitated through the aid of a Citizens’ Jury.

I focus on enhancing institutional trustworthiness rather than general citizen trust because trust should be earned. Inviting participants in with the goal of increasing their trust invites the risk of merely creating social compliance, or a kind of “blind trust” rather than enhancing people’s ability to make healthy choices (Burgess 2014). Consider that sometimes governing institutions should not be trusted for they have lost that trust through historical and chronic medical abuses (Roberts 2010). Similarly, distrust should not be seen as a problem to overcome by regulating it away, for this may lead to backlash. Rather, careful, and deliberative engagement of the kind that helps to expose sceptical people to new information and where their fears and concerns are heard and taken seriously offers a more promising pathway forward toward disagreement resolution and to create more trusting relationships between the people and government.

Trust, after all, is a kind of off-loading of risk analysis. To trust is to be vulnerable because it recognizes we lack certain resources or knowledge that another has (Baier 1986). The trusted, then, is expected to determine what is good or not good for the trustee, thus holding power over them. To trust then is to truly believe that the trusted has the trustee’s welfare at heart when making decisions. To mistrust someone is to have a temporary loss of trust because the trusted failed to maintain their ability to be trusted. To distrust is to hold a systemic scepticism of the trusted due to repeated violations of that trust. Thus, our aim should be to create environments in which people are able to make critical judgments on the veracity of those who promise to act in our best interests.

When an institution, as opposed to an individual, is the object of trust, that means that the policies that flow from them are believed to be ones that are in that individual, or public’s, best interest. When one vaccinates, for example, one believes that the FDA has carefully monitored the safety of the clinical trials and that the risks of the vaccine are far lower than the risks of the disease that they are trying to prevent. Knowing nothing about how vaccines actually work or what the evidence of their safety is from clinical trials, we off-load our risk analysis to the institution established to tell us when they are or are not worth taking. When people refuse to take vaccines out of fear of their safety or side effects, they are expressing doubt in the veracity of the institution to tell us that they are safe (Opel, Salmon & Marcuse 2020). We often trust those closest in proximity to us, for we feel they know us the best and we see ourselves reflected in them, so may choose the risk that is best for us. Thus, the goal of a mini-public would be to create an environment in which people can air their fears and hear from experts in a more concrete way than they ever have before, and to hear from those who are not in our immediate social circles.

In the case of gene editing, cultivating trustworthiness is important for communities that fear the targeting of disability population and the use of a powerful new genetic technology on marginalized populations, and general safety and welfare of its off-target risks (Roberts 2010B). As was seen in the case of genetically modified organisms, trust can be lost quickly when institutions are seen as captured by the interests of corporations and industry that seek profit rather than of the public interest. Thus, in many ways, the fears around whether an institution can conduct non-corrupted risk analysis requires that the institution be transparent and able to listen to the fears of the people as well as the people to expand one’s normal information environment.

Deliberative mini-publics are helpful in cultivating this kind of trustworthy-enhancing environment because of the ways in which people can engage in deliberations that are moderated and interrogate experts. When more varied views of those we can relate to are part of organizations, we have more reason to think that they will reflect our own views.

The literature supports two empirical findings on trust. First, researchers have found that mini-publics aid the trust levels of the outside public. In other words, the general public’s trust in the mini-public is often higher than in other institutions (Boulianne 2018; Font & Blanco 2007; Geisler 2022). For example, in Setälä and colleague’s review article from 2021, researchers analysed a Citizens’ Jury on Referendum Options in Korshom, Findland. Citizens’ Initiative Reviews are a mini-public model wherein participants deliberate on ballot initiatives and then provide summaries of the relevant and reliable arguments for the public. The Citizens’ Jury in Finland adapted this model for referendums, similar to ballot initiatives but often more substantial and popular or even polarizing. The non-profit organization Healthy Democracy Oregon developed this model in response to the problem of ballot imitative information often getting co-opted by stakeholder organizations that fought for support often using all their material resources and manipulation of messaging, such that the resulting outcome was more reflective of whose campaign was better rather than what people actually needed or wanted. Thus, much of the advantage of a Citizens Review process is that it is done by people not associated with politicians or agenda-based organizations. The latter sources, the authors note, can often draw sceptical ire for being problematically biased. Further, the CIR was found to “trigger more deliberative modes of reflection on factual information and pros and cons of policy alternatives” (5). This facilitated trust because it allowed the “voters rise above the personalization of campaigns as well as manipulations and accusations put forward in campaign rhetoric” (13). Setälä et al also concluded that “the fact that information originated from fellow citizens, and that the organizers of the jury were university researchers not involved in local politics, may have contributed to the trustworthiness of the jury” (13).

Second, deliberative groups members experienced an increase of trust with one another (Gastil, Knobloch & Kelly 2012; Font & Blanco 2007; Gastil & Kelly 2012; Gronlund et al. 2010, Min 2007), something that researchers hope will have broader implications for the capacity of mini-publics to create more trusting environments in medicine, health care, and beyond (Warren 1999). In many ways this is not too surprising, given they are strangers to one another at the beginning of the deliberation, so initial trust levels are low. However, it is also an encouraging finding given that one could imagine trust levels decreasing, resulting in such nefarious ends as polarization and further alienation from one another. Rather, we find, collaboration while working through disagreement had positive outcomes (MacKenzie & Warren 2012). Democratic theorists again anticipate that this will have “scaling up” effect wherein the social gains that occur inside a formal deliberative setting will have wider societal impacts (Niemeyer & Jennstål 2018).

In the case of the International Commission and its uptake of Citizens’ Juries, cultivating an inclusive and deliberative form of diverse engagement will help to create a trustworthy outcome, resulting in a document that is more likely to both reflect the public will as well as be understood as such.

Conclusion

The Commission, given its own declared support for it, should take up the mantle of societal engagement in human genome editing before the promise to do so becomes hollow or backfire. To maximize a Global Citizens’ Assembly’s effectiveness as a site of robust moral inquiry that does not merely appear as a pawn of more powerful institutions and to create better considered judgments itself, the next summit of the Commission should include convening a Citizens’ Jury that the Commission is then beholden to incorporate the considered judgments of into their own report. Including a diverse body of lay participants in this way retains the authority of an expert group while bolstering its democratic commitments. This institutional modification, of course, is not to the exclusion of other deliberative or engagement opportunities, such as polling, comment periods, and town-hall style discussions. The systemic view of democracy, rather, offers that policy and law formation are not one-stop institutional events, but asks us to re-imagine who holds authority in different spaces as the need arise. And in the case of human germline genome editing, it is imperative that the public be involved in examining risk and uncertainty, in agenda setting and prioritization of scarce resources, and in the cultivation of our governing institutions’ trustworthiness.