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Introducing CHIRON: Community Health Interests for Researchers & Oversight Networks

Developing and piloting a novel toolkit for researchers, ethics boards, and data access committees to consider group interests in biorepository research

Published onApr 04, 2024
Introducing CHIRON: Community Health Interests for Researchers & Oversight Networks

What is CHIRON? Community Health Interests for Researchers & Oversight Networks (CHIRON) is a research project. Our goal is to develop and pilot a toolkit that will encourage researchers, ethics boards, and data access committees to consider group interests as they plan, execute, and report on big health data research. 

What is big health data research? When people think of health research, they often imagine doctors testing out novel treatments, like new medicines, on their patients. Somewhat surprisingly, loads of health research no longer directly involves the people being researched. Health data from people who have given broad consent flows into massive biorepositories (also called biobanks, databanks, or data repositories). Scientists use the “big health data” in these biorepositories to make discoveries using techniques like machine learning and artificial intelligence. Scientists’ use of this data is often overseen by an ethics committee and/or a data access committee.  

Oncology patient participating in research by receiving a new medication (illustration by Storyset)

Oncology patient participating in research by receiving a new medication (Illustration by Storyset)

Biorepositories can be used for health research without directly involving patients (Illustration by Storyset)

Biorepositories can be used for health research without directly involving patients (Illustration by Storyset)

So why are we building this toolkit? As data flows into these massive biorepositories, it gets further and further separated from the people it originally came from. This loss of context can cause a disconnect between researchers and communities. In the worst case, this disconnect can lead to group harm. Group harm happens when stigmatizing or otherwise harmful group-based generalizations or inferences are made (usually unintentionally) by scientists in the course of their research. Scientists can slip up and make these generalizations more easily when their research doesn’t have community context.

Right now, big health data researchers don’t have many formal tools to help them bring community context back into their research and avoid group harm. We are building the CHIRON toolkit to help researchers, ethics boards, and data access committees reconnect with community context as they conduct and oversee big health data research. 

Who is involved in this project? The CHIRON toolkit is being conceptualized, designed, and built by Sage Bionetworks, a non-profit open science organization based in Seattle, Washington (USA). Megan Doerr is the principal investigator (PI) of the CHIRON project. Meg is collaborating with research scientist Carly Marten and designers Stockard Simon and Adam Hindman at Sage.  

The team at Sage is joined by expert academic and community workgroups convened specifically for this project. The academic workgroup members are Anouk Ruhaak, Astha Kapoor, Maile M. Tauali’i, Melissa Creary, Jasmine McNealy, Joon-Ho Yu, and Samuel A. Moore. The community workgroups are led by Andrea Downing, David Andres Emery, Kalei Glozier, and Odia Kane.

Photos of the CHIRON project team: from Sage Bionetworks Meg, Carly, Stockard, and Adam; academic workgroup members Anouk, Astha, Jasmine, Joon, Maile, Melissa, and Sam; community leads Andrea, David, Kalei, and Odia

Once built, the CHIRON toolkit will be piloted by researchers, ethics boards, and data access committees as they plan, execute, and report on big health data research. The pilots will begin at the end of 2024 and last until the end of 2025. The CHIRON project team, including our academic and community experts, will study the pilots to see if and how the toolkit is working.

Who is funding this project? The Robert Wood Johnson Foundation has provided the funding for this project. 

Want to learn more? Starting from this post, we will be publishing new blog posts every other week about the CHIRON project. Also, you can also watch this short presentation by CHIRON PI Meg Doerr who gave a talk about the project at Penn State’s Rock Ethics Institute in the fall of 2023.

Presentation by Meg Doerr

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