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Investigating Community-Based Review Boards to Enable More Transparent and Ethical Data Collection


Students on this project will assist Illumina with the research and assessment of Community-Based Review Boards to enable greater transparency in the ethical collection and use of patient data. Students should expect to familiarize themselves with the context of different types of ethics review boards and their role in the ethical evaluation of using genomic and phenotypic data derived from secondary research data sources. Students will study other US-based initiatives of Community-Based Review Boards and provide an assessment of their effectiveness to improve transparency and research participants’ voices on the use of collected data. Students will also consider and review alternative mechanisms to improve transparency and participant input that have been pursued in other research contexts.

Project Leads: Nita Farahany, J.D., Ph.D. And Michael “Buz” Waitzkin J.D.

Project Manager: Esko Brummel M.A.