Introduction

Application of human germline gene editing (HGGE) could potentially have such a big impact on society, that it is not only up to scientists and policy makers to decide whether and how to use it. Public and stakeholder engagement needs to be organized to align decisions with the values and needs of society. Such broad and inclusive engagement starts with asking the right questions. Increasingly, the question of “how” we should apply HGGE is put central as if the question of “whether” is no longer on the table. This risks the exclusion of those who hold fundamental objections against HGGE. To safeguard inclusive decision-making, we should continue to ask the question of whether we should apply HGGE. Moreover, in this article we advocate to prioritize exploring “what if” questions first, because they open up the conversation to a broader range of values, needs and perspectives, and thus to a broader diversity of participants.

Towards societal alignment

Decisions about whether or not to pursue human germline gene editing should be aligned with the values and needs within society, as it raises unanswered moral and societal questions. Some of these questions include concerns about, but are not limited to, issues related to respect for human life and dignity, the moral status of the human embryo, inequalities in and between societies, and the overall impact on future children who did not provide consent to alter their genes. Furthermore, the use of HGGE could reduce the acceptance of people with disabilities due to the so-called “expressivist objection”, which holds that the use of these technologies conveys and perpetuates negative perceptions about certain disabling conditions and the people currently living with these conditions. Given the potential large ethical and societal implications, these decisions should not be left to scientists alone. Therefore, the urgent need for public and stakeholder engagement (PSE) on HGGE has repeatedly been expressed by various authoritative national and international bodies and committees.

PSE has the potential to enable policy making that is informed by the values and needs of society at large. Across different disciplines, there are examples of PSE efforts that succeeded to gain insights into the values and needs of society at large which subsequently informed policy-making. That said, while PSE efforts that are issued by governmental policymakers generally feed into policymaking, the output of PSE initiated by researchers does not self-evidently find its way into policy-making. To be effective and enable policy-making, PSE must be comprehensive, transparent, inclusive, methodologically sound and accountable. In working towards societal alignment, we will be ready to make decisions when we are fully informed about the shared and conflicting values and needs that are at stake. To map this large palette of values and needs, a wide diversity of publics needs to be engaged. In this short communication, we aim to provide directions for broad and inclusive PSE by emphasizing the importance of future narratives when deliberating on HGGE.

Inclusive public and stakeholder engagement

Inclusivity is described as one of the ideals for effective PSE in developing HGGE policies and the WHO’s Expert Advisory Committee explicitly calls for inclusive dialogue on the future of human genome editing. This asks for specific efforts to include groups that are underrepresented or even missing completely, because in PSE, we typically reach participants who are highly educated, knowledgeable on the topic, predominantly white, affluent, and have relatively high trust in science. Missing the voices of underrepresented groups poses a threat to the development of societally aligned HGGE governance and regulation. Prior research shows that emotional factors (e.g. fear and habitual distance) play an important role in excluding underrepresented people. The exclusion of underrepresented groups may be influenced by how the conversation on HGGE is framed in PSE. By focusing solely on the conditions under which HGGE can proceed, we risk exclusion of those who hold fundamental objections against HGGE or those who have yet to make up their mind for various reasons. Thus, inclusive PSE for HGGE requires reflection on the value and purpose of the PSE effort itself.

The social conversation around human germline gene editing

Bucchi and Trench (2021) defined science communication as the social conversation around science. This definition does not limit science communication to initiatives organized by people from scientific communities talking to the public. It includes all types and forms of conversation between different people and in different places, both online and offline. To increase the democratic value of PSE, efforts should be made to capture and feed instead of steer the societal discourse regarding HGGE. As (social) scientists, we need to understand that the questions we ask, influence the answers that are given. If we only ask “how” HGGE should be applied, we will not hear all relevant considerations regarding “whether” we should apply HGGE. However, the “whether” question asks for deliberation. In striving for societal alignment, the values and needs of society need to be made explicit. To identify our values and needs for the future, “what if” questions should be addressed first.

Questions of “what if”

‘Globally’, as Françoise Baylis writes, ‘the political consensus on heritable human genome editing—such as it is—inclines toward an outright ban, and if not a ban, at least a moratorium’. Although the scope and means of these regulations and ‘bans’ vary widely internationally, they still provide the opportunity to discuss various futures and to empower people to form their opinions. Opinion-forming can be supported by future narratives about what decisions on HGGE could look like. This skill to imagine diverse and multiple futures and to use these as lenses to look at the present anew, is called futures literacy. Future narratives are especially helpful when it comes to potentially disruptive and relatively unfamiliar technologies, such as HGGE, where the future impact is still difficult to foresee, yet now is the time to make decisions and influence how the technology will be governed. In the Dutch DNA dialogue, a broad societal dialogue to inquire about the views of the Dutch society on HGGE, animations were used to visualize future narratives. The animated future narratives each sketched a different society based on three strategies of applying or not applying HGGE. During the PSE, moderators use these narratives as conversations starters while emphasizing that these scenarios are not inevitable or “the truth”. As such, the future narratives provided guidance for reflection and discussion about HGGE during the dialogues. Using various scenarios that focus on different dilemmas and that show a multitude of perspectives might avoid scenario simplification and unbalanced steering. Futures literacy can aid in the goal of creating societal alignment as questions of “what if” stimulate imagination, thereby opening up the conversation to explore the values and needs of various publics.

The questions of “whether” and “how”

The “what if” questions require time for the public to reflect, slow down, use imagination and think beyond their current lived experiences. They allow the public to think about the ways in which HGGE could improve their lives and the lives of their children, as well as which futures would be undesirable and inconsistent with their values. This speculative “if yes, then how” question should not be confused with the question of “how” HGGE should be implemented. Therefore, it is important to be transparent about this distinction at the outset of PSE. The questions “whether” and “how” provide valuable insight in how practice and policy around HGGE should be organized, which will become relevant once the scenarios of what our society may become are deliberated on. Until then, there is a widely shared responsibility to enable this deliberation and opinion formation. Scientists, scientific societies and policymakers who seek to engage the public should lead by example by making the missing voices explicit and by making room for people who believe the technology should never be used. Broad and inclusive PSE by imagining future narratives is a prerequisite for policy-making in which all voices have been heard and considered and which is aligned with a wide range of societal values and needs.

Conclusion

Broad and inclusive social conversation around HGGE starts with asking the right questions. By focusing on questions of “what if” before “whether” and “how” in PSE we can open up the conversation by creating various future narratives. Consequently, we reduce directivity and framing as initiators of PSE, and increase inclusiveness as this approach does not exclude in advance those who hold fundamental objections against HGGE or those who have yet to make up their mind for various reasons. Actual participation in PSE by the aforementioned groups is something that should be evaluated and monitored continuously. Asking “what if” will surface the values and needs that are at stake, which can then be taken into consideration when the questions of “whether” and possibly “how” are deliberated on.

Authors: Diewertje Houtman, Wendy Geuverink, Isabel Rosalie Arianne Retel Helmrich, Boy Vijlbrief, Martina Cornel & Sam Riedijk

Houtman, D., Geuverink, W., Helmrich, I.R.A.R. et al. “What if” should precede “whether” and “how” in the social conversation around human germline gene editing. J Community Genet (2023). https://doi.org/10.1007/s12687-023-00652-0

The original article can be found here. For use on this website, the text has been slightly modified.

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