Appendix C
Statement of Task
An ad hoc committee will plan and conduct a 1-day public workshop to explore challenges and opportunities associated with integrating genomics into large-scale health systems or public health programs. These programs have a variety of goals, such as providing information to large segments of a given population with or without certain disease conditions about clinically actionable genetic variants, seeking diagnoses for individuals suspected to have rare diseases, and/or advancing research on the genetic contributors to human illnesses. Case studies of genomic testing programs and collaborative learning networks may be highlighted during the workshop as a way to understand successes and lessons learned regarding (1) economic considerations (e.g., clinical utility, value), (2) policy environments (e.g., alleviating privacy and discrimination concerns for participants), and (3) data sharing. Workshop discussions will be held with a broad array of stakeholders which may include health economists, representatives from health care delivery systems, public health officials, bioethicists, implementation science researchers, clinicians, payers, and policy makers. The committee will develop the workshop agenda, select and invite speakers and discussants, and may moderate the discussions. Proceedings of the workshop will be prepared by a designated rapporteur in accordance with institutional policy and procedures.
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