During the 2010’s, the CRISPR-Cas9 technique – with its promise as a new, more efficient, more accurate and feasible form of gene editing – has reignited a popular awareness of genetic science to a degree not seen since the advent of the Human Genome Project of the 1990s. It is now one decade since the 2012 paper that Doudna and Charpentier co-authored and there have been a number of promising developments of the CRISPR tools in research (e.g. research on heritable disease (DMD) and infectious disease (HIV); corrections of genetic bases to some heart defects; to beta thalassaemia). Throughout this time, there have also been developments that have caused concern (e.g. the 2015 embryo gene-editing experiments) and outrage, particularly with the infamous 2018 announcement of the first gene-edited babies (where the changes could be inherited, arguably leading to unprecedented – and premature – interference into the human genome). Concerns have been raised about risk and safety, impact on future generations, unnatural animal-human chimeras, problematic non-medical uses, potential impacts on women and persons with disabilities, and wider impacts on broader society in the form of increasing inequalities (gender, racial, ability) and other concerns of social justice, patenting and ownership issues, and concerns over eugenics. In response, a number of statements (Lanphier et al 2015; Chan et al 2015; Andorno et al 2020), Reports (Nuffield 2016, 2018; NASEM 2017; National Academies/Royal Society 2020), International Summits (2015, 2018, 2021), and a voluminous academic literature have emerged.
Throughout such statements, reports, summits and in the literature, there have been numerous, urgent calls for public engagement and the desire for various degrees of social consensus before the technology either proceeds at all, or before it continues to proceed in various directions (Baltimore et al. 2015). Such calls range from improving science communication (top down) to more deliberative forms of public empowerment (Baylis 2019). Such calls for public dialogue are not unprecedented and have been used in the wider genetics context for some years (Feeney et al 2018). The justifications range from the epistemic (wider inputs of reflection, perspectives, value systems can improve policy guidance in such controversial areas) to normative (everyone who may be affected by a technology should have a say – or at least be consulted – in how it is developed and used) to merely strategic or instrumental (to engage with people to foster acceptance).
The calls for public engagement, some degree of social consensus or that all relevant perspectives and groups are genuinely (not just instrumentally) consulted sounds reasonable and warranted. However, what does it entail specifically? Who should it involve? Does it work? Has it been effective to date? These questions will be critically examined by four papers from diverse perspectives – both in terms of the value of public participation in the context of genome editing and also in terms of normative evaluations of the technology itself. Oliver Feeney explores how public engagement on heritable genome editing will need to attempt forms of genuine participatory-deliberative engagement in order for it to counter the levels of distrust and polarisation in contemporary society. However, Robert Ranisch sees repeated calls for public participation and social consensus to be largely empty gestures, with little influence on the policy and an instrumental interest in creating public trust in biotechnology. Gardar Árnason explores two particular cases of genome editing – organoids and xenotransplantation – in terms of involving relevant stakeholders in policy decisions about the governance of genome editing research. Finally, Gabriele Werner-Felmayer explores the persistence of important misconceptions and how they affect the human genome editing debate – particularly raising the question as to the degree that the public is aware of the risks and experimental nature of a new technology in heritable genomic modification.
Such diversity of viewpoints, expressed in an atmosphere of respect and reciprocity, will not only encourage constructive debate and the potential for progress, but will guarantee an exciting and lively panel session.
Public engagement as a red herring? Shifting moral boundaries in the debate on germline gene editing.
Prof. Dr. Robert Ranisch | University of Potsdam | Germany
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Prof. Dr. Robert Ranisch | University of Potsdam | Germany
When negotiating the ethical & legal boundaries of germline gene editing (GGE), it is commonplace to point out public participation, as well as the need to reach some form of consensus on such technology. Indeed, as a result of the 1st International Summit on Gene Editing in 2015, it was called "irresponsible to proceed with any clinical use of germline editing" unless there is "broad societal consensus". However, within a few years this demand for a broad social consensus on the principle permissibility of such technology became a question of agreement on specific applications of GGE. Key statements & reports from 2015-2019 from science academies & societies will be reviewed regarding the role of public engagement. The stated relevance of public engagement is examined, as well as the questions: which “public” should be involved in what kind of questions & for what purpose. Although the need for public participation was continually emphasized, its role has been increasingly diminished. The former demand for a “broad social consensus” before the first application of GGE has been abandoned even by leading science academies or reduced to approval for specific applications. In retrospect, the effort to achieve any form of consensus on the questions of GGE must be doubted. Measures of public engagement had no significant influence on the policy recommendations & were mostly exhausted by information of the public and an instrumental interest in creating trust in science.
The Governance of Genome Editing Organs and Organoids: Who decides and who cares?
Dr Gardar Árnason | University of Tübingen | Germany
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Dr Gardar Árnason | University of Tübingen | Germany
Genome editing (GE) is finding new applications in various areas of biomedical research and therapy. Two prominent examples are the use of GE in research on organoids, in particular brain organoids, and the use of GE in research on organs grown in non-human animals for transplantation in humans, i.e., xenotransplantation. These developments raise questions about whether new regulation or governance is required and, if so, who will shape them. Researchers, patients, ethicists, policy-makers and various publics may claim an interest in setting ethical guidance and boundaries for this type of research. A review and analysis of recent literature identifies ethical, legal, and social issues that may indicate a need for specific governance measures with regard to brain organoids and xenotransplantation. It is important to involve relevant stakeholders in policy decisions about the governance of GE research and both inform and engage publics to build trust and to understand social issues of acceptance, scepticism and possibly hostility or rejection. Engaging the public may have science communication as a part of its aim but should more importantly be responsive to the views and value judgements from publics outside of science and policy. Ethicists have an important role in providing ethical analysis and arguments, but they should neither act as a moral authority nor should they let themselves be used for window-dressing to increase public trust and acceptance.
Editing the Human Germline: The Good, the Bad and the Ugly
Prof. Dr. Gabriele Werner-Felmayer | Medical University of Innsbruck | Austria
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Prof. Dr. Gabriele Werner-Felmayer | Medical University of Innsbruck | Austria
Since the 1990s, altering the human germline has been the most controversially debated option for DNA modification in humans. Inheritable “therapy”, “prevention” &, “enhancement” of an individual’s genetic make-up or even of human nature in general became a vision for some and a spectre for others. A literature review of the debate regarding key definitions in the field of human genome modification shows the persistence of certain understandings & how they affect the debate. In addition, the case of prematurely marketing genome editing technologies for assisted reproduction reveals misconceptions with regard to therapeutic, preventive or enhancing applications, and indicates vulnerability of “the public” confronted with inheritable genome modification as just another possibility in assisted reproduction. This raises the question whether “the public” is aware of the experimental character as well as the risks of inheritable genome modifications. Thus, “public engagement” would require (i) clear and binding definitions of the purpose of any application, (ii) comprehensive risk communication and deliberation not only about technical safety but also about safety in terms of ethics, understanding the technology’s potential for social disruptiveness, & (iii) develop standards and platforms to raise public awareness of the pitfalls of genetic essentialism and determinism. This, however, needs in-depth research currently lacking to a large degree.
Public engagement on Germline Genome Editing: decreasing or replicating wider polarisation in society
Dr Oliver Feeney | University of Tübingen | Germany
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Dr Oliver Feeney | University of Tübingen | Germany
It is held that governance of germline genome editing (GGE) should be informed by robust public engagement & with a reasonable degree of social consensus regarding wider societal impact. Key rationale is for quality (a wider diversity of perspectives) & legitimacy (allowing people a say in things affecting their lives) of the resulting governance. This process will take place within a broader socio-political context of increasing polarisation, misinformation & questions over the degree of (dis)trust of science & medicine. This requires a review of the existing public engagement suggestions from the GGE literature (including reports & other statements), as well incorporating insights from forms of engagement in the wider field of genetics & research into public trust. There are a number of directions that public engagement on germline genome edit can take – from mere science communication to substantial forms of public empowerment. GGE public engagement proposals vary in terms of their degree of genuine deliberative engagement, suggesting that some may be more effective than others, in terms of their ability to reduce polarisation of viewpoints, correct misinformation & increase meaningful trust. Genuine participatory-deliberative engagement – characterised by mutual respect, co-operation & genuine openness to alternative & opposing views – will be needed to counter the levels of distrust & polarisation seen in the context of genetics & wider society.