Exploring the Current Landscape of Consumer Genomics: A Workshop

Workshop

October 29, 2019

8:30 AM - 5:35 PM (ET)

Past

Materials

About

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.
The Roundtable on Genomics and Precision Health hosted a one day public workshop on October 29, 2019 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 included 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. Workshop discussions were held with a broad array of stakeholders 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.

Videos from the workshop can be viewed here: https://www.youtube.com/watch?v=JzMEI07V5OU&list=PLGTMA6Qkejfh791M7QA8tyiYcgxt-JUVG

Contact

Roundtable on Genomics and Precision Health

genomics@nas.edu

Location

Keck Center

500 5th St NW

Washington DC 20001, USA

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

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Exploring the Current Landscape of Consumer Genomics: A Workshop

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Exploring the Current Landscape of Consumer Genomics: A Workshop