CHIRON scholars Anouk Ruhaak and Joon-Ho Yu team up to explore social license to operate, proposing a novel pathway to community consent by Anouk Ruhaak, Joon-Ho Yu, and Megan Doerr
Published on Jul 25, 2024. DOI 10.21428/4f83582b.47ef599e
I was excited about this week’s post long before it was written: CHIRON scholars Anouk Ruhaak and Joon-Ho Yu agreed to grapple with social license to operate (SLO), a topic that has been on my radar since I started thinking about what exactly “community consent” might look like in practice for the research community. It should come as no surprise that Anouk and Joon’s treatment of SLO is engaging and incisive. The novel adaptation they propose, “group licenses to operate,” compliments the CHIRON project, defining a new path to community co-engagement in repository-enabled biomedical research.
Group licenses to operate (GLO)
How much responsibility do companies, researchers, and other organizations need to take for the communities that might be impacted by their operations? This question is particularly pressing in the context of biomedical research, especially in situations where there is no legal mandate to protect community interests.
Biomedical research, especially within academia, is generally seen as a public benefit. However, two recent developments challenged this assumption. First of all, biomedical research using big data raises ethical concerns, including potential bias and discrimination, especially when research subjects are categorized or assigned group identities. Secondly, the ability to collect and store large amounts of personal data for biomedical research raises questions about consent and data protection.
We believe both individuals and groups should have a say in how they are represented, what information about them is exposed, and in what context. But while individual rights are generally protected by privacy laws, such laws typically do not extend to groups. Here we propose a new concept: Group Licenses to Operate. This builds on the increasingly popular idea of a Social License to Operate and incorporates our learnings on Community Consent (a concept that underpins the CHIRON toolkit).
Social License to Operate
In the 1990s, prolonged protests in the mining industry revealed that companies could not rely solely on legal compliance to maintain their operations. These protests, often driven by concerns over environmental impact and community rights, forced mining companies to engage with local communities to find mutually acceptable solutions. This engagement led to the emergence of the concept of a Social License to Operate (SLO).
SLO suggested that a company’s ability to operate should not only depend on following the law but also on adhering to informal social norms and being seen as trustworthy by the communities it affects. By securing a Social License to Operate, mining companies could ensure smoother operations and reduce the risk of conflict. Since then, the concept of SLO has spread to other industries, which highlights an increased awareness among corporations that their success depends on gaining public trust.
The shortcomings of SLO
Unfortunately, while SLOs can generally be seen as a step in the right direction, they are not without their shortcomings. If we were to apply the concept to the domain of biomedical research and data collection more broadly, we’d do well to grapple with these pitfalls. Generally, SLOs raise two immediate concerns: ethics washing and a version of populism.
Ethics washing refers to the tendency of companies to view SLOs as merely a marketing or reputational challenge, rather than a call for meaningful public or societal engagement. Companies might address this through marketing campaigns or community grants, essentially buying off public approval instead of genuinely consulting the community.
By populism, in relation to SLOs, we mean that SLOs often cater to the loudest voices or the most influential consumers, neglecting the diverse and sometimes conflicting interests of different stakeholders. This approach fails to require companies and researchers to understand the varied needs, risk perceptions, and interests of all stakeholders. It also does not mandate active engagement with impacted communities in the design and execution of their operations, including research.
In the context of biomedical research, SLOs present two additional problems. First, the concept assumes a uniform public, ignoring the diversity of stakeholders and their varied interests. This oversight can lead to misunderstandings about what is considered the public good. Second, the idea of SLO implies that society as a whole approves the research, similar to an ethics board. In reality, different communities might want to be involved at various stages of the research process, such as deciding whether the research should proceed or determining how findings are released.
Moreover, SLOs are susceptible to a temporal fallacy, or presentism, meaning they may not adequately account for changes over time. For example, if a social license is initially granted but later revoked, can the previously collected data still be used? This question is particularly relevant in the era of machine learning and AI, where large-scale computational analysis of biorepository data is common. Data collected for one purpose may be used repeatedly in various studies over time. If the social license is lost due to changing community attitudes or new ethical concerns, is ongoing or future use of the data still ethical or permissible?
Therefore, the temporal dimensions of social license must be considered. This involves recognizing that social acceptance and community consent are not static and can evolve. Researchers and companies must be prepared to address these changes and potentially adjust their practices, ensuring ongoing ethical compliance and maintaining trust with the community.
Group License to Operate
To address the limitations of the Social License to Operate (SLO), we propose an alternative: Group Licenses to Operate (GLO). This approach acknowledges the complexity and diversity of modern societies by focusing on specific groups rather than a singular, homogenous "social" entity.
GLO signals a recognition that multiple relevant groups exist, each with its own set of concerns and interests. These interests may sometimes be in competition with one another and must be accounted for individually. Instead of seeking approval from a single "social" body, GLO involves engaging with various groups to extend different licenses for a research project.
GLO should be revocable. If a community withdraws its consent due to emerging ethical concerns, the research should pause and be reassessed to address these issues before proceeding. Clear guidelines must be established on what happens when a license is revoked, the conditions under which renewed engagement with a group is necessary and the steps to be taken if a license is lost.
Finally, different licenses should govern different phases of the research, allowing for a more nuanced and adaptable approach. For example, a license granted for initial data collection might be separate from a license for data analysis or publication of results. Each phase would require renewed engagement and consent from the relevant groups, ensuring that ongoing approval is maintained throughout the research process.
GLO and Community Consent
The CHIRON toolkit was built on the idea of community consent. That is, the notion that when research concerns specific communities, those communities should be involved in the research process, consent as a community, and explicitly consent to the (re)use of their data. In many ways, this concept overlaps with the idea of Group Licenses to Operate.
In our view, the two concepts complement each other. A GLO is the result of a process of community engagement that results in a community consenting to a specific license. GLOs, therefore, are the products of the community consent process that permits research to progress in lock step with community interests. By integrating community consent into the creation of GLOs, we can ensure that all relevant groups are actively involved in decision-making processes, leading to more equitable outcomes.