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Suggested Citation:"Appendix D: Statement of Task." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
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Appendix D

Statement of Task

Genomic medicine is advancing rapidly due to research breakthroughs and technology development. However, it is not clear if genetic/genomic services will reach all segments of the population both now and in the near future. To address potential gaps in access to these care services, an ad hoc committee will plan and conduct a 1-day public workshop to explore disparities in access to genetic/genomic services that exist across different segments of the population (e.g., in medically underserved areas and populations, across different racial/ethnic groups, and socioeconomic levels). The workshop may discuss model programs of care for diverse patient populations, with a focus on examining current challenges, approaches and best practices for alleviating disparities in access, which may include the geographic distribution of providers and services and the potential role of telemedicine. Workshop discussions may also focus on insurance coverage for genetic/genomic services, along with the financial costs for patients of genetic testing and downstream care. A broad array of stakeholders may take part in the workshop, including genomics experts, health economists, public health and health disparities researchers, clinicians, users of the health care system (e.g., consumers, patients), patient advocacy groups, payers, bioethicists, community members, 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 D: Statement of Task." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
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Suggested Citation:"Appendix D: Statement of Task." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
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Page 97
Suggested Citation:"Appendix D: Statement of Task." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
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Genomic medicine is defined as the routine use of genomic information about an individual as part of his or her clinical care as well as the health outcomes and policy implications of that clinical use. It is one approach that has the potential to improve the quality of health care by allowing practitioners to tailor prevention, diagnostic, and treatment strategies to individual patients. In recent years, research breakthroughs, technological advances, and the decreasing cost of DNA sequencing have led to the wider adoption of genomic medicine. However, as with the introduction of new technologies into health care, there are concerns that genetic and genomic testing and services will not reach all segments of the population both now and in the near future, and there remains a gap in knowledge regarding potential health care disparities in genomic medicine and precision health approaches.

On June 27, 2018, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to examine the gaps in knowledge related to access to genomic medicine and to discuss health care disparities and possible approaches to overcoming the disparate use of genomic medicine among populations. Workshop participants discussed research on access to genetics and genomics services in medically underserved areas, model programs of care for diverse patient populations, and current challenges and possible best practices for alleviating health care disparities as they relate to genomics-based approaches. This publication summarizes the presentations and discussions from the workshop.

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