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Exploring the Current Landscape of Consumer Genomics - Proceedings of a Workshop (Paperback)
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Exploring the Current Landscape of Consumer Genomics - Proceedings of a Workshop (Paperback)
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Consumer genomics, encompassing both direct-to-consumer
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 past
decade, moving from more personal utility-focused applications
outside of traditional health care to interfacing with clinical
care in nontraditional 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. To explore
the current landscape of consumer genomics and the implications for
how genetic test information is used or may be used in research and
clinical care, the Roundtable on Genomics and Precision Health of
the National Academies of Sciences, Engineering, and Medicine
hosted a public workshop on October 29, 2019, in Washington, DC.
Discussions included such topics as the diversity of participant
populations, the impact of consumer genomics on health literacy and
engagement, knowledge gaps related to the use of consumer genomics
in clinical care, and regulatory and health policy issues such as
data privacy and security. A broad array of stakeholders took part
in the workshop, including genomics and consumer genomics experts,
epidemiologists, health disparities researchers, clinicians, users
of consumer genomics research applications, representatives from
patient advocacy groups, payers, bioethicists, regulators, and
policy makers. This publication summarizes the presentations and
discussion of the workshop. Table of Contents Front Matter 1
Introduction and Workshop Overview 2 Understanding Consumer
Genomics Use 3 Exploring the Role of Diversity and Health
Disparities in Consumer Genomics 4 Integration Within Scientific
and Medical Communities 5 Regulatory and Health Policy Issues 6 How
Can Consumer Genomics Be Better Integrated to Improve Health?
References Appendix A: Workshop Agenda Appendix B: Speaker
Biographical Sketches Appendix C: Statement of Task Appendix D:
Registered Attendees
General
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