What kinds of roles will the ethics core play within the ICB?
We envision that the Ethics Core will provide a wide range of support services that will act as an “in-house” research ethics consultation on ethical, legal, and social issues that arise in the development and implementation of the ICB. This may include:
- Support for the development of policies and governance structures for the ICB to address issues related to data sharing, informed consent, the return of results, and patient privacy.
- Support for developing and improving consent forms or educational materials for patients and the public
- Support for community outreach and activities including the possible development of a Community Advisory Board (CAB)
In addition to these advisory roles, we will promote collaborations between Core faculty and the ICB to develop projects that explore the ethical and social aspects of the ICB’s work, including:
- Pilot studies to assess patient/public attitudes related to data collection and research use
- Pilot studies related to researcher perspectives and practices related to data sharing
- The development of larger collaborative projects (R01’s) related to ethics and the work of the ICB