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Community-Based Participatory Research and Research Ethics: Partner to Partner: Case Stories

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Gigi McMillan
Founder and Executive Director
We Can, Pediatric Brain Tumor Network

I wear a lot of hats. We Can - Pediatric Brain Tumor Network is a non-profit organization based in Los Angeles. We empower families to manage their medical situation and to become part of the "process" as their children go through treatment. There are almost 600 families in the We Can Network in California. I'm also on two IRBs at the University of California, Los Angeles (UCLA)-one as a community member and one as a subject representative for the cognitively impaired. I also sit on the National Cancer Institute's Central Institutional Review Board (IRB) that reviews children's cancer studies and am a member of a subcommittee for Secretary's Advisory Committee on Human Research Protections (SACHRP). UCLA was my first experience with an IRB and it took me two years before I finally began to feel comfortable doing my job. Two years is too long of a learning curve. Read more about Gigi's Story

 

Otsehtokon Alex M. McComber and the Kahnawake Schools Diabetes Prevention Project (KSDPP)
Former KSDPP Training Coordinator

 

As history demonstrates in Indigenous communities: "Outside research teams swooped down from the skies, swarmed all over town, asked nosy questions that were none of their business and then disappeared never to be heard of again." -Louis T. Montour MD, 1987. Kahnawake embarked upon a community-university partnership to create a program designed to be a different approach to research-research that would give back to the community. Read more about Alex and KSDPP's Story

Sheila Beckham
Preventive Health Services Director Waianae Coast Comprehensive Health Center

The Waianae Coast is home to the fourth largest number of native Hawaiians in Hawaii and has long been a focus of researchers desiring to study native Hawaiians, collect data, and leave when funding ends. In 1990, The Waianae Coast Comprehensive Health Center, a Federally Qualified Community Health Center, entered into a joint research relationship with the University of Hawaii's Cancer Research Center to implement the Waianae Cancer Research Project. The Waianae community established and published a set of research protocols, principles and guidelines for participatory research in 1992, and the protocol for the dissemination and publication of data in 1995 that would guide future community-based research. Read more about the Sheila's Story



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