Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop (2018)
Chapter: Appendix D: Statement of Task
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.
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