Promoting Equality in the Governance of Heritable Human Genome Editing through Ubuntu: Reflecting on a South African Public Engagement Study

Abstract In a recent public engagement study on heritable human genome editing (HHGE) conducted among South Africans, participants approved of using HHGE for serious health conditions—viewing it as a means of bringing about valuable social goods—and proposed that the government should actively invest resources to ensure everyone has equal access to the technology for these purposes. This position was animated by the view that future generations have a claim to these social goods, and this entitlement justified making HHGE available in the present. This claim can be ethically justified in the Ubuntu ethic (deriving from South Africa) as it (a) emphasizes the interests of the community, and (b) espouses a metaphysical conception of the community that transcends the present generation and includes past and future generations. On this basis, a compelling claim can be made on behalf of prospective persons in favor of equal access to HHGE.


INTRODUCTION
In the literature on the ethics of heritable human genome editing (HHGE) one finds frequent references to concern about this technology's impact on equality (Brokowski 2018). This concern stems from the existence of socioeconomic inequality and how this inequality leads to disparities in access to technology, such that poor and marginalized people struggle to access new innovations. Thus the concern is that HHGE, if made available to the public, will not be equally accessible to all, and this will lead to an exacerbation of existing societal inequalities (Evans 2021; van Mil, Hopkins, and Kinsella 2017). This is a concern that some scholars, such as Manitza Kotz e, have described as a particularly acute risk in states where the divide between rich and poor is especially pronounced, such as South Africa (Kotz e 2014). For some scholars this is regarded as a strong reason in favor of prohibiting HHGE (Shozi 2020).
What is apparent from this argument is that the kind of (in)equality that is contemplated is inequality in the distribution of resources-a distributive (in)equality. Put differently, the concern is that HHGE may produce undesirable social outcomes that amplify or entrench the distribution of social goods in society, such as through the emergence of a genetically engineered upper class who would have advantages over the un-engineered lower class because the lower class is too poor to access these technologies (Silver 2007). Therefore, it is the position of these scholars that the path toward a more equal future is one without HHGE.
An important observation to make at this point is that the concern about a genetically unequal society is based on predictions about future social outcomes. Given the speculative nature of the concern, scholars such as John Harris question whether it ought to be taken seriously, given that the use of HHGE technologies may never become sufficiently widespread for any significant social divides to form along genetic lines (Harris 2010). Furthermore, Harris argues that even if HHGE did become widespread, the correct approach would be for us to take measures to make these technologies as widely available as possible-thereby remedying inequality and promoting human flourishing. There is a divide among bioethics scholars in terms of how they envision what a future society with access to HHGE would look like. Rather than be concerned about HHGE technology further amplifying inequality, some scholars assert that HHGE can even be viewed as a means of rectifying existing social inequality through its use as a mechanism to address the disparity in our genetic endowments (Evans 2021;Stock and Campbell 2000). They envision HHGE as an indispensable tool in building a path toward a more equal future. Although predictions about potential future social outcomes are invariably speculative, we suggest that considering the possible societal consequences of new technology is important, as it allows present policy actors to conceptualize and put in place measures aimed at attaining desired social outcomes and avoiding or minimizing undesired ones. If there is to be effective governance for HHGE, this governance should be informed by a particular vision of the future and the role (if any) that HHGE should play in bringing that future to fruition. Accordingly, assuming a public policy commitment to distributive equality as a political value, the question must be asked: How should HHGE be governed in order to promote distributive equality?
As we have just outlined, the answer to this question is a contested one, as there are differences of opinion on what the path to a more equal future looks like (i.e., with HHGE or without it). This is unsurprising, given that the governance of novel technologies often turns on value-laden and contextually defined issues (Thaldar, Shozi, and Kamwendo 2021), and the importance of distributive equality as a policy objective and how best to pursue it are such issues. In this article we explore the answer proposed by a recent public engagement study on HHGE conducted among South Africans.
We begin the paper by outlining the importance of public engagement in the African context as a means for giving voice to African perspectives, making specific reference to the African philosophical concept of "Ubuntu." Following this, we describe why we chose to utilize a deliberative public engagement methodology, and briefly describe it. We then proceed to analyze how the study participants viewed distributive equality in relation to HHGE. We conclude by outlining and interesting aspect of the participants' view of distributive equality, namely that distributive equality applies to future generations, and we investigate whether such a claim can be ethically justified. This exploration is done with reference to the aforementioned African philosophical concept of Ubuntu, which we argue is aligned with (and may have informed) the participant's views.

PUBLIC ENGAGEMENT IN AFRICA AND THE CONCEPT OF UBUNTU
The governance of science and technology in Africa has long been dictated by foreign ideas. This is especially true of the biomedical sciences, where many of the laws and policies in effect in African countries today were either directly created by Westerners (during colonial rule) or are a by-product of thoughts and ideas deriving from the West-as these often define what is regarded the international standard (Widdows 2007). Because of this, African scholars have decried the persisting "neo-colonialism" of bioethical discourse on the governance of new technologies and argued for African voices and perspectives to play a meaningful role in the development of policy that affects Africans (Fayemi and Macaulay-Adeyelure 2016;Shozi 2020;Widdows 2007).
In light of the foregoing, it is beyond doubt that developing governance for HHGE in Africa must take into account African perspectives on important issues such as ethics, but this cannot occur without engagement on these perspectives. That being said, it should be clarified that there is no singular position that can be described as representing the African perspective on the ethics of a particular technology. Rather, a position may be described as an African perspective insofar as it constitutes a critical engagement with African views on morality and how these views are relevant to said technology. This may best be achieved through an exploration of the dominant philosophical streams of thought in a particular African community. In the context of South Africa, one such stream of thought concerns the philosophical concept of Ubuntu, which has been characterized as a hallmark of the philosophical thinking of communities and persons in sub-Saharan Africa, and as central to the political culture of post-apartheid South Africa (Bennett and Jacobs 2018). For the purposes of our public engagement study, which focused on South Africa, Ubuntu played an important role in framing both the impetus for the study, as well as the interpretation of some of the results. For these reasons, it is important to discuss the concept Ubuntu here briefly.
The concept of Ubuntu is often characterized as the underlying ethic of sub-Saharan African cultures. It holds that all human beings, being inherently social creatures that live interrelated lives, require other human beings in order to live a good life; and so, individuals in a community owe reciprocal obligations to each other aimed at achieving harmonious relations in society (Munyuka and Mothlabi 2009). This concept is associated with the Nguni expression "umuntu ngumuntu ngabantu," which may be translated to be "persons depend on persons to be persons" (Metz 2011;Mokgoro 1998;Shutte 2001). Accordingly, promoting communal harmony is the Ubuntu ethic's central virtue. Interestingly, the word Ubuntu itself can be used as a synonym for virtue in the Ubuntu ethic. One can describe somebody behaving virtuously in the Ubuntu ethic by saying "unoBuntu," meaning "that person has Ubuntu." As is evident from the foregoing, the Ubuntu ethic is communitarian in nature, such that what is considered morally praiseworthy entails having regard not only for the interests of the individual but also for the interests of the community, given the fundamental interrelatedness between the individual and the community. However, this is not to say that the interests of the community must supersede those of the individual member. Instead, the interests of individuals and the community must be balanced against each other, on the reasoning that acts by persons in a community invariably have consequences for the community at large (and vice versa). In the context of considering whether to allow the use of new technologies such as HHGE, the Ubuntu ethic requires an acknowledgement of the interests of the individual but maintains that they are to be considered along with the interests of the community more broadly. One such community interest that is of particular importance in the present context is the interest in promoting equality, which resonates with the Ubuntu ethic's central virtue of promoting harmonious communal relations (Ramose 2002a).
In our view, Ubuntu is relevant to the bioethical discourse on the governance of HHGE in at least two ways. First, it brings attention to the need for public engagement, as this allows for decision-making on policy to be made with a proper understanding of how HHGE may impact communal harmony. Secondly, Ubuntu informs how ethical questions raised by HHGE-such as whether a society where people use this technology is more or less equal-are understood. We expand on this in more detail below, with reference to responses from the participants in our study.

WHY DELIBERATIVE PUBLIC ENGAGEMENT?
The importance of public engagement on HHGE is broadly acknowledged (see, e.g., National Academy of Medicine, National Academy of Sciences, and The Royal Society 2020; WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing 2021). However, what kind of public engagement is the most suitable? In the context of new technology such as HHGE that is not widely known or properly understood by the public at large, it should be clear that traditional approaches to public engagement such as opinion polls are likely to be impeded by uninformed and ill-informed opinions, and will therefore be of limited value (Adashi et al. 2020;. Thus, public engagement initiatives should first ensure that the respondents are sufficiently well-informed on the topic to be able to form (well-informed) opinions. In other words, respondents should have a sufficient grasp of the new technology to understand its potential impact on individuals and society at large. At least in polities that are in principle committed to rational policy-making, this would be a prerequisite.
There is also another factor to consider. A person in isolation might not be able to think of all the possible societal impacts of a new technology such as HHGE, nor of all the possible values that those impacts evoke. However, a group of persons deliberating with each other can significantly remedy this shortcomingespecially if the group comprises persons from diverse backgrounds. Deliberation is defined as "interaction marked by reason-giving and inclusion," in contradistinction from discussion, which is "interaction without being guided by a process that emphasizes reason-giving and inclusion" (Schneiderhan and Khan 2008). If such a deliberation is facilitated in such a way that avoids persons with seemingly superior knowledge, greater passion or strong personalities from dominating others, opinions can be exchanged on an equal footing, thus creating an opportunity for everyone's thinking on the topic to be broadened (see, e.g., Altman 2019). Also, deliberation is a good way to pinpoint weaknesses in one's opinion that one would not necessarily be able to realize on one's own. In other words, deliberation can lead one to change one's initial opinions to opinions that one feels are better able to withstand critique, or better aligned with the values that one wishes to uphold (see, e.g., Fishkin 2018). As suggested by the definition of deliberation above, well-facilitated deliberation should focus on reason-giving and inclusion. By considering other persons' reasons for their opinions, one's own thinking on a topic is broadened-and perhaps challenged and even changed. Again, polities that value rational policy making ought to value deliberation.
Accordingly, as South Africa has a constitutional commitment to rational policy making, the public opinion study on HHGE among South Africans adopted a deliberative public engagement methodology. This methodology entails that (a) measures were put in place to ensure that participants became informed about HHGE, and that (b) participants were engaged in facilitated deliberation on a number of policy proposals. Importantly, the study did not aim to recruit a large statistically representative sample of the South African population, but instead aimed to recruit a group of South Africans that is just large enough to include a diverse range of backgrounds, but small enough to make effective participation in the deliberation by each participant possible. Accordingly, the South African study involved a group of 30 persons who were diverse in terms of race, gender, religion, age and level of education.

RESULTS OF THE SOUTH AFRICAN STUDY: EQUALITY MATTERS
The results of the study are reported in detail by Thaldar et al. (2022). In brief, provided that HHGE is safe and effective, an overwhelming majority of participants supported allowing the use of HHGE not only to prevent genetic health conditions, but also for immunity against serious diseases such as tuberculosis (TB) and human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS). Such genetically engineered immunity has been viewed as an unethical "enhancement" by members of the public elsewhere (Gaskell et al. 2017;Jedwab et al. 2020), but this view was not observed among the participants. Rather, the participants overwhelmingly supported using HHGE for immunity against these serious diseases. Participants in the South African public engagement study were animated by the view that HHGE for health-related purposes will be an important social good-so much so that it was suggested that the South African government should be more proactive by allocating resources to promote scientific research into HHGE. However, a significant majority of the participants opposed allowing HHGE for nonhealthcare-related uses.
The dominant theme during the deliberations was balancing health benefits and associated improvements in quality of life with unforeseen health risks such as loss of natural immunity. The seriousness of a health condition was the determining factor for the policy choice of whether to allow an application of HHGE.
Important for present purposes, equal access to HHGE for health-related purposes came to the fore as an important value. As one participant put it in reporting on his deliberation group's consensus in support of using HHGE for immunity against infectious diseases: However, the participants did not view concerns about possible unequal access to HHGE technology as a reason to prohibit the technology altogether, but rather as a reason for active state intervention to make HHGE for health-related purposes accessible to everyone in society. As one participant opined: he government should play a huge role in being quite competitive and in being part of this new change and making this quite accessible to everyone in order not to divide the gap further to increase the inequalities within our societies as it is already quite an inequitable society." Scholars have discussed the problem of distributive inequality as a reason for outlawing HHGE altogether, or significantly limiting it (Kotz e 2014; Macpherson, Roqu e, and Segarra 2019; van Mil, Hopkins, and Kinsella 2017;Xafis et al. 2021). What most of the participants in the South African study did propose was that access to HHGE for preventing less serious genetic conditions, such as asthma or eczema, should be conditional on first ensuring that sufficient state resources be allocated to ensuring that HHGE for preventing serious genetic health conditions is accessible to everyone in society. This, we suggest, is both pragmatic and a powerful expression of support for distributive equality as a political value.

EQUALITY AND ACCESS FOR FUTURE GENERATIONS
As alluded to above, participants in the South African public engagement study were animated by the view that HHGE for health-related purposes will be an important social good. However, it is a social good granted only to future generations. This warrants deeper analysis. Future generations were seen as benefiting in at least two ways: First, at the individual level, by having better health, often expressed as better "quality of life;" second, at the societal level, by cost savings, both in terms of the reduced healthcare cost brought about by fewer people with serious health conditions, and in terms of more healthy people who can be economically active. The present generation was seen as not benefiting and only facing the healthcare costs of developing and implementing HHGE for healthrelated purposes.
Accordingly, the claim to equal access to HHGE as healthcare service for everyone is indeed a claim on behalf of prospective persons, as the participants assert not only that future generations can benefit from access to HHGE, but that they ought to where doing so can lead to social goods in the form of better health and better quality of life. The participants also believe that this claim must be taken so seriously as to outweigh the countervailing interests of present persons. But, whether entitlements to social goods can be extended to persons not yet alive is not obvious. Can the position taken by the study participants-that prospective persons have an entitlement to equal access to HHGE as a healthcare service-be ethically justified? We explore an answer to this question from an African philosophical perspective.

PROMOTING EQUALITY IN THE GOVERNANCE OF HHGE THROUGH UBUNTU
Earlier in this paper, we introduced the concept of Ubuntu, and described its status as a communal ethic, in terms of which ethical issues are considered with equal regard for both the interests of the individual and the interests of the community. Importantly for present purposes, the concept of the community embraced by the Ubuntu ethic transcends the physical, temporal realm; it has a distinctly metaphysical nature that holds that persons currently living are part of an interconnected and interrelated whole with their ancestors and future generations-referred to as "the beings of the future" (Ramose 2002b). As such, in the philosophical worldview of the African communities in sub-Saharan Africa, ethical acts are judged not only in how they impact those who are presently in existence but also in how those acts relate to the revered ancestors and future generations. This vision of a metaphysical continuity between past, present, and prospective persons is articulated by Murove (2009) as follows: "African ethics arises from an understanding of the world as an interconnected whole whereby what it means to be ethical is inseparable from all spheres of existence. Here Ali Mazrui cannot be bettered when he says: 'African civilizations were characterized by the following attributes: no great distinction between the past, the present and the future; no great distinction between the kingdom of God, the animal kingdom and the human kingdom; the crocodile could be a god; no sharp divide between the living and the dead' … Thus, in African ethics, relatedness is not restricted to human relations but extends to the natural environment, the past, the present and the future. This relatedness blurs the distinction between humanity and nature, the living and the dead, the divine and the human." It is upon this basis that scholars who explore African philosophical perspectives on environmental ethics have noted that the concept of Ubuntu provides a conceptual foundation for a moral duty held by present persons to give significant weight to the interests of future generations in a manner that is not reflected in mainstream Western ethics (Grange 2012;Murove 2004). From this, it is apparent that those adhering to the Ubuntu ethic would, in considering the morality of a particular act, also consider the implications of this act for persons who may exist in the future and thus give serious consideration to their interests.
Accordingly, the claim on behalf of prospective persons to an important social good-in the present context of equal access to HHGE qua healthcare service-is not only justified by the Ubuntu ethic, it is in fact demanded by the Ubuntu ethic.

CONCLUSION
The interaction between legal, ethical and social values, as expressed during the public engagement study, should not be underestimated: Both equality and access to healthcare services are enumerated rights in the South African Bill of Rights. The South African government has over the last generation actively promoted the values of the Constitution-and the Bill of Rights in particular-as the basis for nation building and constructing a South African identity (Baines 1998;Msila 2007;Sauter 2015) In this light, the importance that the participants in the South African public engagement study on HHGE allocated to equal access for everyone to HHGE as a healthcare service makes sense and reflects the success of the valuebased nation-building process.
Although there is no explicit reference to Ubuntu in the Constitution, Ubuntu is widely accepted as an underlying influence on the Constitution. As a worldview and value system, Ubuntu is part of the cultural heritage of the majority of South Africans. Accordingly, one can say with confidence that the Ubuntu ethic informed the thinking of many of the study participants, although not necessarily all. To be clear, we do not contend that the Ubuntu ethic is the sole reason for the outcome of the study, nor that the Ubuntu ethic is unique in placing value on the welfare of future generations, but rather that the Ubuntu ethic is an important part of understanding the outcome of the study.
While most of the participants in the South African public engagement study were skeptical of non-healthrelated applications of HHGE, an overwhelming majority of the participants supported HHGE for serious health conditions. However, this support did not stand in isolation but was linked to distributive equality, and in the case of HHGE for less serious genetic conditions there was an explicit appeal to distributive equality. Importantly, the vision for the governance of HHGE presented by the South African public engagement study is one in which the state plays an active role in ensuring distributive equality by investing resources to make HHGE for serious health conditions accessible to everyone.
This idea that distributive equality should be accomplished by "levelling up," not "levelling down," has support in South Africa's constitutional jurisprudence. In the case of Minister of Home Affairs v Fourie (1) SA 524 (CC), which legalized same-sex marriage in South Africa, Justice Albie Sachs, writing for a unanimous Constitutional Court bench, held as follows: "Levelling down so as to deny access to civil marriage to all would not promote the achievement of the enjoyment of equality. Such parity of exclusion rather than of inclusion would distribute resentment evenly, instead of dissipating it equally for all. The law concerned with family formation and marriage requires equal celebration, not equal marginalization; it calls for equality of the vineyard and not equality of the graveyard." In the context of HHGE for serious health conditions, the participants in the South African public engagement study clearly agreed with this interpretation of equality.