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Implementing and Evaluating Genomic Screening Programs in Health Care Systems: A Workshop

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.

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

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