Completed
The goal of this workshop was to examine the types of evidence being collected as part of genomics-based programs at health care systems, consider near-term opportunities for advancing knowledge about the clinical utility of genomic screening, discuss financial aspects of genomics-based programs, and explore policy issues such as data security and privacy, increasing diversity, and ensuring equitable access.
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Workshop
ยท2018
Genomic applications are being integrated into a broad range of clinical and research activities at health care systems across the United States. This trend can be attributed to a variety of factors, including the declining cost of genome sequencing and the potential for improving health outcomes an...
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Description
An ad hoc committee will plan and conduct a one day public workshop to explore challenges and opportunities associated with integrating genomics into large-scale health systems or public health programs. These initiatives have a variety of goals such as providing information 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 large-scale genomics 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.
Collaborators
Sponsors
Department of Health and Human Services
Other, Federal
Private: For Profit
Private: Non Profit
Staff
Sarah Beachy
Lead
Major units and sub-units
Health and Medicine Division
Lead
Board on Health Sciences Policy
Lead