Ethics and Global Governance of Human Germline Genome Editing: The Problem of Techno-Scientific Colonialist Paternalism

Introduction

Since He Jiankui told the world that his experiment using CRISPR-Cas9 to alter the CCR5 gene in two human embryos had culminated in the birth of two babies, several government institutions, professional associations, and independent groups (almost all from the Global North [Supplementary File, section 1]) have expressed their opinions ¹ and submitted recommendations for regulating such research in the future.

While it is important to examine the various arguments being made about the ethics and governance of human germline gene editing (HGE), I want to emphasize an underappreciated yet important set of concerns regarding exclusionary practices that impede a more diverse discussion about what is at stake in HGE. My aim is to analyze the complex social and political relationships that underlie discussions of HGE by exploring the power relations perpetuated via the current debate.

Power relations move through every level of this issue in economic and geopolitical arenas and at the intersection of the scientific and lay communities. The possibility for establishing a binding, global, regulatory framework is determined by economic and geopolitical factors, as well as historical processes and sociopolitical problems, such as anti-scientific social movements and the politicization of science. Likewise, it is heavily influenced by different understanding, epistemic resources, and goals between the scientific community and the rest of society. In order to assess these power relations, I propose the concept of “techno-scientific colonialist paternalism.”

This Perspective is divided into three sections. First, I explain what constitutes “techno-scientific colonialist paternalism” and why it negatively affects our discussion about aspects of HGE. Next, I discuss the pitfalls of scientific self-regulation. Finally, I advocate that the implementation of HGE should cease to allow time and care for a thoughtful global discussion to emerge.

Techno-Scientific Colonialist Paternalism

Building off the concept of medical paternalism, in 2003, Hofmann introduced the notion of technological paternalism, which explains that a person's autonomy is limited not only by the intentional actions of other agents but also “due to social and epistemic structures.” ² He suggested that “a perspective that includes social and conceptual constraints should be added to the perspective of personal autonomy and individual liberty.” Technological paternalism appeals to the idea that epistemological and social frameworks, including technology, may limit our autonomy in ways similar to how individual agents limit our options. Technology affects us not only through our individual intentional acts with devices, but also through its methods, organizations, and epistemic structures, such as beliefs and myths. ²

Based on Hofmann's idea, I propose the concept of techno-scientific colonialist paternalism. This form of paternalism emerges in scientific culture. It refers to the fact that as a result of imperialist modern history, the Global North amasses scientific and political capital that influences international standards in many fields, including science and trade policies and regulations. Therefore, those in the Global North (in both scientific and political contexts) impose their priorities, interpretations, and ethical notions on the rest of the world, putting aside insights from the Global South.

Techno-scientific colonialist paternalism has shaped the field of HGE. In this context, the need for an open and participatory dialogue has been confused with the organization of international conferences that only give voice to an elite set of specialists, primarily from the Global North. Similarly, these international conferences about HGE rely heavily on scientific experts who come from Northern Hemisphere institutions, such as the National Academies or the Nuffield Council Report. ³

As the debate about HGE in the Global North has been framed via the lens of reproductive freedom, ⁴ the scope of the conversation has been limited, obscuring equally important discussions of other societal and political implications. ⁵ The main argument put forth in 2015 in favor of HGE is that we should pursue it, at least to prevent some specific diseases, if certain safety and efficacy regulations are met, along with a comprehensive social dialogue to legitimize the regulatory standards in research and clinical application. ⁶

Nevertheless, such conditions have not been made fully explicit and are therefore not sufficiently promoted or even acknowledged. ⁷ If those who participate in the social dialogue continue to be specific elites, again likely from the Global North, it will be an insufficient conversation, not broad enough to legitimize regulations. A debate on HGE, infused with techno-scientific colonialist paternalism, will not prioritize more diverse and participatory spaces of dialogue.

Even though a few bioethicists^8,9 have mentioned that HGE can increase global socioeconomic inequality, the possible impacts of HGE on inequality have not been sufficiently discussed. ¹⁰ Moreover, others argue that the effect of HGE on inequality is not even a valid concern, let alone a relevant consideration of the desirability of whether to continue research. ¹¹

Using HGE for reproductive/therapeutic purposes is just one of the many potential uses for this technology, but it would be an alternative only for a few people in certain countries. As we focus on this area, we overlook many other issues. For instance, one unintended consequence of investing hopes, efforts, and economic resources in HGE is an increase in global inequality as result of abandoning research to develop medications and other therapies unrelated to genome editing. If investors pour economic resources into this technology because it yields high profits, fewer resources will be available for biomedical research that could benefit people from the Global South, where genetic screening and in vitro fertilization are not as accessible as they are in the Global North. Under these circumstances, certain preferences and socio-historical perceptions are assumed as universal (or at least are privileged in ways that erase others), which leads to obscuring other aspects that deserve discussion and affect other societies or social groups with whom scientists and regulators have not yet engaged.

Besides that, large-scale genetic studies of human disease are predominantly based on populations of European ancestry, thus causing a problem of under-representation of ethnically diverse populations, which hinders the possibility of a profound knowledge of the genetic basis of human disease. ¹² This situation has ethical and scientific consequences, for instance the exacerbation of existing health inequalities, ¹³ in addition to privileging the experiences and values of the Global North.

Another example of the influence of techno-scientific colonial paternalism in thinking about HGE is the narrative used by certain leaders in this field. Shortly after the revelation of the CRISPR babies in 2018, George Church told a reporter, “He's just an acquaintance. But it seems like a bullying situation to me. The most serious thing I've heard is that he didn't do the paperwork right. He wouldn't be the first person who got the paperwork wrong. It's just that the stakes are higher … I don't think these kids [CRISPR babies] are going to die.” ¹⁴

Critical discourse analysis teaches us to pay attention to the sender's symbolic capital and the context in which any statement is made. Dr. Church is a prominent scientific figure in the field of genetic editing. His description of He's actions as an error in “paperwork” constitutes a reductionist framing of the problem and a dismissal of the importance of this debate. Moreover, his remarks imply an ethical–political position regarding what is at stake in HGE. From that position of power, the multiple nuances of the conflict are ignored or construed as matters of minor importance. Hence, his comments frame the ethics of scientific research as a mere administrative procedure, devoid of social and political context or power relations. However, many scientists have taken a different position in this debate. ¹⁵

A distinctive mark of techno-scientific colonialist paternalism is the assumption, based on what Ortega y Gasset called “the barbarism of specialization,” ¹⁶ that subjects considered as subordinates have barely something to contribute to the discussion. Furthermore, attitudes such as those expressed by Dr. Church illustrate how techno-scientific colonialist paternalism hinders the possibility of creating the basic requirements for a broad dialogue, under conditions of equality and justice.

Some may argue that Global South countries are not as powerless as I suggest. After all, even if the North dismisses the South, nations are free to adopt their own laws and regulations. While it may be true that nations could make their own laws, that is not the main issue at stake here. Because the science under discussion is an endeavor of global and trans-generational consequences and due to the strong influence of the very power relations I am spotlighting, it is naïve to think that Global South nations could simply follow their own path. If the technology is being developed in the Global North, then the Global South passing its own regulations will have no effect on the actual practice. In fact, it may even reinforce techno-scientific colonialist paternalism more by opening Global South nations to charges that they are not “really excluded” or that they are “backward” simply because they are doing things differently.

Scientific Habitus and the Techno-Scientific Community's Self-Regulation

The debate on whether HGE is an ethical imperative, a morally acceptable possibility, or a morally atrocious audacity can be summed up in the long-standing confrontation between technological optimism and pessimism. ¹⁷ There are persuasive arguments to defend both views, but if we are to take them seriously, then we should pay attention to what Bourdieu ¹⁸ explains about the production of science. Science contains contradictions, tensions, and various individual, collective, and corporate agendas, which we need to explore in the discussion about HGE global regulation. The problem comes from the fact that is because techno-scientific colonialist paternalism determines the framing of the issue and therefore prescribes which elements should be left out of the debate. Thus, it is difficult to bring more complexity to the discussion. Power relations operating in the scientific and ethical discussion of HGE will continue to be unchallenged as long as the discussion keeps its focus on the interests, practices, and concerns of the techno-scientific elite.

This exercise of power produces two forms of subalternity: epistemic and geopolitical. In geopolitical subalternity, the colonialist power relations assure that the privileged world views in the discussion concerning ethics and regulation of HGE are those rooted in the cultures and interests of the most powerful countries. In epistemic subalternity, the knowledge and epistemic standards of the Global North are favored, creating an imbalance that conceals needed critiques to those standards.

Just as the priest becomes a director of conscience, ¹⁹ scientists who exercise techno-scientific colonialist paternalism produce relations of epistemic subalternity when they assume that their role in the debate is to promote what they consider to be desirable or necessary. In this process, scientists rarely, if ever, allow themselves to ponder perspectives seriously from those outside of the privileged scientific community. As a result of this unreflective listening, they do not frankly engage with society. And these practices both erode public trust and create epistemic subclasses. ²⁰

Take, for example, Craig Venter's statement: “The question is when, not if.” This extreme form of technological optimism neither values dialogue, dissent, and social participation in the decision-making process related to the uses of science nor seriously analyzes “the rightful place of science in governing the future in democratic societies.” ²¹ Instead, it simply presumes that science and technology should play a dominant role in democratic societies.

We should also see how technological optimism can promote techno-scientific paternalism because it also privileges scientific knowledge and scientists' interests over democratic processes. In democratic societies, the decisions on the if should lie not in the community of specialists but in society. Appropriate procedures and institutions are required to make such decisions. ²² In the event that such procedures or institutions do not exist, the priority is to build them, instead of delegating that decision to a group of people who have no political legitimacy or representativeness to do so, and who have also shown that their self-regulation mechanisms are feeble.

He Jiankui's case is a window into many of the weaknesses of both technological optimism and techno-scientific community's self-regulation capacity. It should have elicited a humble, self-reflective response because it revealed the connections between technological optimism and the persistent but not that well-deserved confidence in the self-regulatory capacity of the techno-scientific community.

One of the possible causes for this failure is the weakness in ethical–political literacy of those who are engaged in this field. ²³ Françoise Baylis writes that both scientific and ethical–political literacy are necessary to make responsible decisions about the regulation of techniques such as CRISPR. ²⁴ I would suggest that historical and political literacy is required as well. However, ethical reflection about scientific work is not integrated into the practices that make up the scientific habitus.

Among the proposals to face this challenge is one to create a global observatory for gene editing. ²⁵ The World Health Organization has already put together an Advisory Committee. ²⁶ And, given the need to have a broad societal conversation before reaching an international consensus, I commend Sheila Jasanoff's proposal to create an Exploratorium ²⁷ on this matter and to integrate the political economy of innovation into the discussion about the ethics and governance of HGE.

I am also sympathetic to the “enlightened democracy approach.” ²⁸ For the authors, a democratic approach is not adequate enough because “it sacrifices reasoned and well-informed decision-making for the sake of democratic values.” Such a statement is a judgment that assumes that well-informed decisions are always taken by the few and not the many. This is far from universally obvious or true. Expanding dialogue does not have to entail sacrificing expert advice or denying the value of scientific information. And, as Eric Lander said, “the conversation itself has value for opening up spaces for previously undiscussed questions ^* … we need to engage in an open debate just because scientists and experts alone have no right, whatsoever, to make these decisions.” ²⁹

Based on the above, I argue that resistance to recognizing the intrinsic value of an expanded dialogue grounded on active debate and open-mindedness from all parties derives from the institutional culture rooted in techno-scientific colonialist paternalism, which in turn reproduces itself through a scientific habitus. Besides the reasons stated, this is also problematic because it generates a situation of structural epistemic injustice that must be recognized and solved in order to democratize the decision-making processes regarding the use of disruptive technological developments.

Put differently, techno-scientific colonialist paternalism engenders epistemic injustice. ³⁰ By this, I mean that techno-scientific colonial paternalism is part of a larger web of oppression that creates structures that wrong people specifically in their capacities as knowers. Building on these ideas, Anderson proposed a solution by focusing on the structural dimension of the problem: “A structural remedy for epistemic injustice is a virtue of large-scale systems of inquiry. Just as individuals are accountable for how each acts independently, we are accountable for how we act collectively. Epistemic virtue is needed at both individual and structural scale.” ³¹ Addressing techno-scientific colonialist paternalism requires both ethical and epistemic virtues as well as political determination.

Slow Down and Listen

There is enormous pressure within research centers to produce products quickly and to bow to the efficiency obligations of financial institutions. As Brown noted in 2009 in discussing market rhythms imposed on the dynamics of science, they rush products to market to meet urgency, but “this urgency often harms science more than politics.” ³²

We see the effects of this pressure in He's experiment. Even though “there was no need to burn down the house,” as Lander said, ²⁹ He Jiankui faced this pressure as not only market interests but also geopolitical interests—the interests of the scientific professionals who want to “win” and maintain their societal and global authority (often in ways that preclude incorporating ethical analysis).

This haste and its ethical effects ^† can also be perceived in the change of tone between the 2015 and 2017 National Academies reports. As Wolinetz notes, the 2017 report distances itself from the conclusion of the 2015 Summit with respect to HGE and suggests a shift toward the translational path, as if the fundamental questions have already been resolved.^20,33 One of the conclusions of the 2015 report is the need for “an Ongoing Forum. While each nation ultimately has the authority to regulate activities under its jurisdiction, the human genome is shared among all nations. The international community should strive to establish norms concerning acceptable uses of HGE and to harmonize regulations (Supplementary File, section 3), in order to discourage unacceptable activities while advancing human health and welfare.” ³⁴

Although these reports do not reflect an international consensus, they have been interpreted as if they were a global guide. Beyond this, the 2017 report's ethical recommendations (p. 134) are largely restricted to safety and efficacy issues. This ignores and excludes many significant ethical concerns about HGE and constitutes a reductionist framing of the problem. Even worse, it reveals that the conversation about the ethics of opening the door to HGE occurred between people who, in one way or another, profess technological optimism. The value of incorporating the vision of technological pessimists in these discussions is that the exploration and analysis are thus broadened. The inclusion of technological pessimism reminds us of the duty to apply the precautionary principle with rigor and seriousness.

Steven Hyman used the expression “the erosion of reasonable precaution and of ethical norms” ³⁵ in referring to the circumstances surrounding Jiankui's experiment. The prevalence of technological optimism partially prevents serious questions from being raised about both HGE and the erosion of the precautionary principle. In times of geopolitical rivalry, the precautionary principle and other ethical standards of research are perceived as an obstacle in the techno-scientific race.

Conclusion

To examine more carefully the socio-cultural, geopolitical, economic, ethical, and scientific elements that are at stake in the discussion on the advisability of whether to continue with he, it is crucial to slow down. ³⁶ It is likely that fear, triggered by religious and anti-scientific fanaticism in several countries (Supplementary File, section 2), has become an obstacle for considering a mandatory pause on HGE for clinical experimentation with reproductive purposes. But it is also true that some social groups fear the techno-scientific community because of its sometimes opaque communication and accountability. ³⁷ These expressions of distrust block democratic deliberation and cannot be overcome without an open conversation that has no hidden agendas.^38,39.

Given the state of affairs, it is the duty of the scientific community to prevent more human beings from being produced by HGE, not only until safety and efficacy are demonstrated, but also until a truly broad and inclusive societal dialogue about this subject has taken place. ⁴⁰ For that to happen, we must recognize that persistent inequality and exclusion exists in genomic research, in the scientific international community and in the geopolitical arena. We must also resist the resilience of technological colonialist paternalism in the discussion. And we must acknowledge that power relations affect the capacity of the techno-scientific community to self-regulate.

In the process of making room for this dialogue, research and the translational path to clinical applications of HGE should slow down. To create a climate of trust and democratic participation, a temporary binding global moratorium should be enforced by an intergovernmental organization. And the history of human rights and bioethics should be brought back into the decision-making process to remind us of what is at stake. We owe at least these things to Lulu and Nana, whose lives have been unjustifiably determined by the irresponsibility and negligence not only of He Jiankui but also of several scientists who could, and perhaps should, have intervened. ⁴¹