August 13, 2021, by Brigitte Nerlich
From RRI to RBM: How gene drive drives new efforts in engagement
The other day, I was listening to the very interesting history of genetic engineering, including gene editing and gene drive, as told by Matthew Cobb in his three-part radio series: Genetic dreams, genetic nightmares. This reminded me that I hadn’t thought or written about gene drive for a while, one of the most controversial genetic engineering technologies – evoking both dreams of disease eradication, especially malaria, and fears of ecological disaster. I am part of a Wellcome Trust funded project on gene drive communication; so I should communicate, I thought.
To find some inspiration, I started to mess about on Scopus, a database of scientific articles, to see what has been going on while I wasn’t looking. I put in “gene drive” as a search term and got 4260 results; not a lot, but work on this topic seems to be increasing rapidly. I then pressed ‘analyze results’ and looked at the top authors.
A certain A. A. James came up top. I then went to one of the articles he co-authored, pressed his name and found that the second, co-authored, article on the list was entitled “Perspective Piece: Application of the relationship-based model to engagement for field trials of genetically engineered malaria vectors”, published recently in The American Journal of Tropical Medicine and Hygiene. I also found out that Anthony A. James works at the University of California, Irvine in various fields microbiology and molecular genetics.
The lead author for this intriguing article, co-authored by a plethora of scientists, is Ana Kormos from the University of California, Davis. It turns out that she has written a blog post on the article in which she describes herself as Engagement Program Manager, University of California Irvine Malaria Initiative (UCIMI). This initiative has, according to the article, “developed gene drive–based systems for population modification of the African malaria vector mosquito, Anopheles gambiae, with the goal of contributing to the eradication of malaria” (p. 807).
Why did I find this article so intriguing? Since around 2011, social scientists have been proposing ‘responsible research and innovation’, or RRI, as a governance of science approach that was supposed to supersede plain old public engagement. The framework has been extensively used in discussions about gene drive.
A relationship-based model to engagement
However, I had, so far, never heard of RBM or a ‘relationship-based model’ to engagement and was intrigued. What do the authors say about it and why do they think it’s a good idea to use this model in the context of gene drive? I’ll provide quite an extensive summary if the main tenets here, as I believe, RRI researchers might want to have a look at it.
The RBM has its roots in patient-centred health care which began to be investigated in around 1969 and came more to the fore in around 2004 and 2006, under the title ‘relationship-based care’ (p. 806). The concept is now applied to gene drive in a context where the National Institutes of Health have begun to emphasise translational research “which included a community engagement (CE) component” (p. 805) in around 2006.
The approach focuses on “effective CE practices and credible, independent risk assessment to ensure safe ethical and scientifically rigorous trials” of gene drive technologies, in this case genetically engineered mosquitoes with gene drive.
The authors define engagement “as the facilitation and support of collaboration, open communication, and dialogue for the exchange of knowledge, perspectives, opinions, and preferences among diverse groups of people” (p. 806). Regulatory engagement, in turn, is defined as “the engagement process with relevant stakeholders, community members, and publics who will be involved in the assessment of risk and regulatory oversight of the technology at the field trial site.” (ibid.). Later, on p. 808, they come back to more detailed descriptions of community engagement and regulatory engagement in the context of ‘interdisciplinarity’.
They also define their main engagement ‘audiences’, that is, communities, stakeholders and publics. These are really useful definitions!
“1. Communities: Groups of people who live within the geographical location or biologically relevant proximity to a potential site where research is taking place or where field releases may take place such that they have tangible and immediate interests in the research project. Communities are included within the broader category of ‘stakeholders.’
2. Stakeholders: Organizations, groups, or persons with professional or personal interests sufficient to justify engagement, but who may, or may not, have geographic proximity to potential intervention sites for the research project.
3. Publics: Groups who lack the direct connection to a project that stakeholders and communities have but nonetheless have interests, concerns, hopes, fears, and values that can contribute and influence decision-making about the research and possible use of the vector control intervention.” (p. 807, emphasis added)
Like some other recent approaches to public engagement, the relationship-based model tries to get away from a linear conduit model of communication and engagement, but unlike other models it puts the stress not on ‘dialogue’ but on the building of ‘relationships’. The RBM “provides applications for building and strengthening relationships and establishes an environment in which individuals are actively engaged in decision-making processes regarding their health and how they receive care, rather than as recipients of messaging campaigns and prescriptive guide- lines.” This must, of course also include dialogue and conversations (see for this figure 1 in the article, in particular).
The authors also stress that this way of working with people has to respect and work with, i.e. adapt to, not replace, “accepted laws, policy, regulation and governance” (p. 807).
Core concepts of the model are defined in the following way:
“1. Individuals drive decisions that determine their health and health outcomes.
2. Relationships are important to understand the history, values, beliefs, and circumstances of communities and community members.
3. Relationships of trust support collaboration, shared decision-making, and active participation.
4. Optimal conditions for decision-making in the development of public health programs/interventions include the recipients at the point of care.
5. Communication, collaboration, and coordination between individuals/communities and the programs, agents, health systems, and services involved in the delivery of health and public health interventions are needed.
6. In complex, dynamic human systems, one size does not fit all.” (p. 807, emphasis added)
The UCIMI program applied these concepts by sharing “a proposed project plan and timeline early in the initial engagement phase with stakeholders from potential field sites to address specific needs, requirements, and concerns unique to the site. From these early discussions, a final site-specific program timeline was determined by its stakeholders. These timeline and project work plan were then shared with existing and potential funders in conjunction with a written description of the RBM for engagement.” (pp. 807-808)
Evaluation and communication
The article also goes on to describe how important it is that “Malaria research programs applying the gene drive technology at a field site can learn and benefit from existing relationships and collaborations, education and awareness campaigns, social media and website access, and other tools and resources that are part of the existing malaria control programs and/or health system.” (p. 808)
There should be continuous active learning, evaluation and capacity building of both community and regulatory engagement – and this from the very start (see Box 3 in the article).
All efforts should be made to create shared knowledg, understanding and skills. For this to come about, communication has to focus on “active listening, open-ended questions, understanding individual communication styles and roles in relationships, identifying assumptions and communication roadblocks, reflecting (paraphrasing and restating both the feelings and words of the speaker), and developing shared language and definitions associated with the program.” (p. 809)
All these recommendations seem to be eminently sensible – and conveyed with admirable clarity.
RRI and RBM
Responsible research and Innovation, or RRI, has been promoted by social scientists and science research funders for over a decade. In this context, and aware of potential future controversies, the gene drive community, a loose group of scientists (e.g. molecular scientists, entomologists, modellers), funders and supporters of the research, began to discuss issues around public engagement and science communication, since around 2014, focusing on responsibility, transparency and openness, amongst others, all issues that seem to be at the core of the RBM approach.
So, I was a bit surprised not to find any mention of the phrase RRI in the article on the RBM of engagement. Likewise I have no seen an engagement with the RBM approach within the RRI community. I’d love to know what the two communities make of that and what the reasons my be.