A guided tour of the CHIRON blog series, exploring what community interests, consent, and trustworthiness mean in big health data research by Megan Doerr
If you’re finding your way to the Community Health Interests for Researchers & Oversight Networks (CHIRON) project for the first time: welcome. CHIRON exists for a simple reason that’s easy to overlook in the era of “big health data.” As data moves into large biorepositories—and as machine learning and AI make it ever more powerful—research can drift further away from the people and communities behind the data. That loss of context can create real risk, including group harm: stigmatizing or otherwise damaging generalizations or inferences about communities that can be made (often unintentionally) when community context is missing.
This hub post is a guide to our CHIRON blog series. Below you’ll find a short overview of what each post covers, along with a link out to each individual installment. If you want a suggested reading path, we’ve included that too—because while these posts can be read in any order, they also build on one another.
Start here: What CHIRON is and how we’re building it
Introducing CHIRON: Community Health Interests for Researchers & Oversight Networks
What it covers: The “why” behind CHIRON: what big health data research is, how biorepositories create distance between researchers and communities, and why that distance can increase the risk of group harm. It also introduces the CHIRON team, our partners, and the project’s purpose: developing and piloting a toolkit for researchers, ethics boards, and data access committees to consider group interests throughout research.
Link: Read “Introducing CHIRON”
Citation information: Doerr, M. (Apr 04, 2024). Introducing CHIRON: Community Health Interests for Researchers & Oversight Networks. Sage Bionetworks. DOI: 10.21428/4f83582b.e90cf586
Engaging Academics & Communities to Develop the CHIRON Toolkit
What it covers: CHIRON is powered by two kinds of expertise that are too often separated: academic knowledge holders and community experts. This post describes how our academic workgroup and community workgroups approached a shared set of framing questions (about community definition, consent, representativeness, and engagement), and how community engagement studios shaped the toolkit from the beginning.
Link: Read “Engaging Academics & Communities…”
Citation information: Marten, C., Moore, S., & Doerr, M. (Apr 18, 2024). Engaging Academics & Communities to Develop the CHIRON Toolkit. Sage Bionetworks. DOI: 10.21428/4f83582b.24d36f6f
The core questions: What “community” and “consent” mean in a biorepository context
On the Meaning of Community Consent in a Biorepository Context
What it covers: A pragmatic but ambitious foundation: why individual consent alone becomes inadequate in biorepository-enabled research, and what it means to talk about “community” when communities are messy, overlapping, dynamic, and sometimes externally defined. The post offers a framework for thinking about different types of community in this context—formal, informal, invisible, and impacted—and why governance and representativeness are so central.
Link: Read “On the Meaning of Community Consent…”
Citation information: Kapoor, A., & Moore, S. (May 02, 2024). On the Meaning of Community Consent in a Biorepository Context. Sage Bionetworks. Edited by M. Doerr. DOI: 10.21428/4f83582b.c71eefb9
Roles & Responsibilities of Researchers & Communities in Research
What it covers: A direct question with big implications: if research training and oversight systems are built around protecting individuals, who is responsible for anticipating harms that fall on communities? This post explores what researchers and institutions can do beyond boilerplate ethics language—especially in big data settings—and what communities can do (and already do) to demand meaningful inclusion, accountability, and protection against group harm.
Link: Read “Roles & Responsibilities…”
Citation information: Tauali’i, M. (May 16, 2024). Roles & Responsibilities of Researchers & Communities in Research. Sage Bionetworks. Edited by M. Doerr. DOI: 10.21428/4f83582b.abfecd5c
When community consent matters—and how to think about it as a process
In what situations is it necessary to invoke consent of a predefined community?
What it covers: If CHIRON is about community interests, the obvious next question is: when do researchers actually need to invoke community consent and engagement—especially in secondary data use? This post argues that “invoking consent” is rarely a one-time event. It becomes a process of engagement, education, and enablement—particularly when collective interests are at stake, when communities have legal rights (including sovereignty), when sensitive topics or prior harms are involved, and across the full data lifecycle.
Link: Read “In what situations…”
Citation information: Yu, J.-H. (May 30, 2024) In what situations is it necessary to invoke consent of a predefined community?. Sage Bionetworks. Edited by M. Doerr. DOI: 10.21428/4f83582b.995801e2
Community evolution and the validity of consent over time
What it covers: Biorepositories can have an effectively indefinite lifespan. Communities do not. This post tackles what happens when communities change—through external shocks, changing membership, demographic shifts, fractionalization, or conflict—and how those changes can affect the ongoing validity of community consent. It also proposes a practical way to think about change along axes like speed and impact, and why researchers and oversight bodies need mechanisms for check-ins and re-engagement.
Link: Read “Community evolution…”
Citation information: Ruhaak, A. (Jun 13, 2024). Community evolution and the validity of consent over time. Sage Bionetworks. Edited by M. Doerr. DOI: 10.21428/4f83582b.648bd5c0
Moving from principles to practice: Indicators, tradeoffs, and governance realities
Indicators for engaging communities
What it covers: “Community engagement” can become a buzzword—especially when research timelines reward speed rather than trust. This post asks what concrete indicators should guide when and how researchers engage communities in secondary data use research. It emphasizes readiness (of communities and of researchers), trust-building, power sharing, agreements, compensation, and community roles before/during/after research. It also names the tension directly: big data and ML/AI often move faster than the “speed of trust.”
Link: Read “Indicators for engaging communities”
Citation information: Creary, M. (Jun 27, 2024). Indicators for engaging communities. Sage Bionetworks. Edited by M. Doerr. DOI: 10.21428/4f83582b.949be8ec
Community consent: neither a ceiling nor a floor
What it covers: Is community consent a minimum ethical standard (a “floor”)? Or an aspirational ideal (a “ceiling”)? This post argues that framing is too simple. Using vivid examples of the networked nature of genetic data and consent, it explores where community consent and individual consent collide, what governance requires (and what it can’t guarantee), and why researchers should treat community consent as part of the infrastructure for responsible biodata research—not a box to check or a trump card to override individuals.
Link: Read “Community consent: neither a ceiling nor a floor”
Citation information: McNealy, J. (Jul 11, 2024). Community consent: neither a ceiling nor a floor. Sage Bionetworks. Edited by M. Doerr. DOI: 10.21428/4f83582b.49ad262e
Group Licenses to Operate
What it covers: What do researchers (and institutions) owe communities when there isn’t a clear legal mandate to protect group interests? Building on the idea of a Social License to Operate, this post proposes an adaptation for biomedical research: Group Licenses to Operate (GLO). The central idea is that different groups may require different forms of permission and engagement, that these “licenses” should be revocable, and that different phases of research may require different licenses—rather than a single, one-and-done notion of approval.
Link: Read “Group Licenses to Operate”
Citation information: Ruhaak, A., & Yu, J.-H. (Jul 25, 2024). Group Licenses to Operate. Sage Bionetworks. Edited by M. Doerr. DOI: 10.21428/4f83582b.47ef599e
The project’s path: The toolkit, trustworthiness, and the pilot
10) Update on the CHIRON toolkit
What it covers: The toolkit is built—and ready for piloting. This post shares what the toolkit looks like in practice: a set of self-reflective tools embedded into the work researchers and oversight bodies already do (planning, proposals, analysis, dissemination), a “trustworthiness calculator,” original background documentation (including topics like group harm and demographic labeling), and transparency-forward host pages. It also shares the pilot window and what to do if you’re interested in participating.
Link: Read “Update on the CHIRON toolkit”
Citation information: Marten, C., & Doerr, M. (Aug 08, 2024). Update on the CHIRON toolkit. Sage Bionetworks. DOI: 10.21428/4f83582b.e2b129cc
11) The CHIRON Trustworthiness Calculator: Origin & Rationale
What it covers: Where did the “trustworthiness calculator” come from—and what is it trying to do? This post explains how the idea emerged through community engagement studio conversations (and why the team intentionally avoided building a public-facing “review site” or an externally sourced “social credit score” for researchers). Instead, CHIRON takes a pragmatic stance: focusing on trustworthy practices—like transparency, recognizing communities represented in data, and shifting from an individual-only frame toward group benefit and harm. The post also names the limits of self-assessment (including the risk of “gaming” a tool) and makes space for the longer arc of redemption and reparation when trust has been broken.
Link: Read “The CHIRON Trustworthiness Calculator: Origin & Rationale”
Citation information: McNealy, J., Tauali’i, M., Marten, C., Kapoor, A., Yu, J.-H., & Doerr, M. (Aug 15, 2024). The CHIRON Trustworthiness Calculator: Origin & Rationale. Sage Bionetworks. DOI: 10.21428/4f83582b.8aba1c41
12) Piloting the CHIRON Toolkit: Navigating Evaluation
What it covers: Building a toolkit is only half the work; the other half is figuring out whether it actually changes practice. This post outlines how CHIRON will be evaluated by its intended users—biorepository researchers and oversight committees—and what the team is trying to learn: Does the toolkit prompt more meaningful consideration of group interests? How does it fit into existing workflows? What barriers prevent adoption? The post explains why toolkits are hard to assess using only controlled usability testing and introduces a more contextual approach (including diary studies), complemented by interviews, moderated usability testing, observation, and document analysis.
Link: Read “Piloting the CHIRON Toolkit: Navigating Evaluation”
Citation information: Kalweit, S., & Doerr, M. (Sep 05, 2024). Piloting the CHIRON Toolkit: Navigating Evaluation. Sage Bionetworks. DOI: 10.21428/4f83582b.7f7da98a
Want to explore or use the CHIRON toolkit?
If you’re a researcher, an ethics board member, or part of a data access committee or an educator, mentor, funder, community member, or other shareholder in the repository research ecosystem and you’re curious about exploring or using the CHIRON toolkit, here is the link to the CHIRON Toolkit Homepage.
Link: CHIRON Toolkit Homepage