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Suggested Citation:"Appendix C: Statement of Task." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
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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.

Suggested Citation:"Appendix C: Statement of Task." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
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Suggested Citation:"Appendix C: Statement of Task." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
×
Page 123
Suggested Citation:"Appendix C: Statement of Task." National Academies of Sciences, Engineering, and Medicine. 2018. Implementing and Evaluating Genomic Screening Programs in Health Care Systems: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25048.
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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 and cutting the costs of care. The goals of these genomics-based programs may be to identify individuals with clinically actionable variants as a way of preventing disease, providing diagnoses for patients with rare diseases, and advancing research on genetic contributions to health and disease. Of particular interest are genomics- based screening programs, which will, in this publication, be clinical screening programs that examine genes or variants in unselected populations in order to identify individuals who are at an increased risk for a particular health concern (e.g., diseases, adverse drug outcomes) and who might benefit from clinical interventions.

On November 1, 2017, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to explore the challenges and opportunities associated with integrating genomics-based screening programs into health care systems. This workshop was developed as a way to explore the challenges and opportunities associated with integrating genomics-based programs in health care systems in the areas of evidence collection, sustainability, data sharing, infrastructure, and equity of access. This publication summarizes the presentations and discussions from the workshop.

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