Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol's evolution.
Stephanie A KraftCarmit McMullenNangel M LindbergDavid BuiKelly ShipmanKatherine AndersonGalen JosephDevan M DuenasKathryn M PorterTia L KauffmanAlyssa KoomasChelese L RansomPaige JacksonKatrina A B GoddardBenjamin S WilfondSandra Soo-Jin LeePublished in: Genetics in medicine : official journal of the American College of Medical Genetics (2020)
While involving patient stakeholders in study design and materials development can increase inclusivity and responsiveness to patient needs, patient feedback may conflict with that of content area experts on the research team and IRBs who are tasked with overseeing the research. Our analysis highlights the need for further empirical research about ethical challenges when incorporating patient feedback into study design, and for dialogue with genomic researchers and IRB representatives about these issues.