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Exploring the Current Landscape of Consumer Genomics: A Workshop

Completed

The Roundtable on Genomics and Precision Health will host a public workshop on October 29, 2019 exploring the current landscape of consumer genomics and implications for how genetic test information may be used in research and clinical care. Discussions may include diversity of participant populations, impact on health literacy and engagement, knowledge gaps related to use in clinical care, and data privacy/security concerns. A broad array of stakeholders may take part in the workshop, including genomics and consumer genomics experts, epidemiologists, health disparities researchers, clinicians, users of consumer genomics research applications, patient advocacy groups, payers, bioethicists, regulators, and policy makers.

Description

Consumer genomics, encompassing both direct-to-consumer (DTC) applications (i.e. genetic testing that is accessed by a consumer directly from a commercial company apart from a health care provider) and consumer-driven genetic testing (i.e. genetic testing ordered by a health care provider in response to an informed patient request), has evolved considerably over the last decade, moving from more personal utility-focused applications outside of traditional health care to interfacing with clinical care in non-traditional ways. As consumer genomics has increasingly intersected with clinical applications, discussions have arisen around the need to demonstrate clinical and analytical validity and clinical utility due to the potential for misinterpretation by consumers. Clinical readiness and interest for this information have presented educational and training challenges for providers. At the same time, consumer genomics has emerged as a potentially innovative mechanism for thinking about health literacy and engaging participants in their health and health care. An planning committee will plan and conduct a one day public workshop to explore the current landscape of consumer genomics and implications for how genetic test information is used or may be used in research and clinical care. Discussions may include topics such as diversity of participant populations, impact on health literacy and engagement, knowledge gaps related to use in clinical care, and data privacy/security concerns. A broad array of stakeholders may take part in the workshop, including genomics and consumer genomics experts, epidemiologists, health disparities researchers, clinicians, users of consumer genomics research applications (e.g., consumers, patients), patient advocacy groups, payers, bioethicists, regulators, and policy makers. The planning committee will develop the workshop agenda, select and invite speakers and discussants, and may moderate the discussions. A proceedings of the presentations and discussions at the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines.

Collaborators

Committee

W. Gregory Feero

Co-Chair

Catherine A. Wicklund

Co-Chair

Bruce Blumberg

Member

Natasha Bonhomme

Member

Aaron Goldenberg

Member

George Mensah

Member

Victoria M. Pratt

Member

Donna Roscoe

Member

Jacquelyn Y. Taylor

Member

Joyce Tung

Member

Sponsors

Department of Health and Human Services

Other, Federal

Private: For Profit

Private: Non Profit

Staff

Sarah Beachy

Lead

Meredith Hackmann

Michael Berrios

Siobhan Addie

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