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Research Ethics Forum
Is Keck Ready to be a 21st Century Academic Medical Center?
Topics: Data warehouses, incidental findings, secondary findings
1. What makes this lecture valuable and helpful?
Clinical and translational research—from basic understanding of disease etiology to evaluation of clinical practices and population health—will increasingly depend on analyzing “big data” drawn from the extensive information gathered from clinical care and research interventions and stored by medical centers. When combined and organized into registries, repositories, databases, and “data warehouses,” such compilations of data and biological samples have the potential to accelerate a wide range of research. As the Keck Medical Center prepares to establish such a data warehouse, all medical practitioners at Keck will in effect become part of the center’s research enterprise.
2. What does it teach viewers and how does it help them do their research?
Viewers of this “Ethics Forum” will learn about the steps underway at Keck to establish a data repository to facilitate research and about how people using that repository—just as researchers using existing registries—will face questions about having identifiable versus anonymized samples, about the debate over using “opt out” versus “opt in” to enroll patients into clinical databases, and about the dilemmas that can arise when researchers return the results of research studies (as opposed to validated clinical test results) to patients or turn up a finding that was not merely incidental to the purpose of the study they were conducting but actually unanticipated as a possible result.