| Description |
1 online resource (1 PDF file (xix, 92 pages)) : illustrations |
| Physical Medium |
polychrome |
| Description |
text file |
| Bibliography |
Includes bibliographical references. |
| Summary |
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. |
| Funding |
This project was supported by contracts between the National Academy of Sciences and 23andMe; Air Force Medical Service (Contract No. FA8052-17-P-0007); American Academy of Nursing; American College of Medical Genetics and Genomics; American Medical Association; Association for Molecular Pathology; Biogen; Blue Cross and Blue Shield Association; College of American Pathologists; Color Genomics; Department of Veterans Affairs (Contract No. VA240-14-C-0037); Eisai Inc.; Geisinger; Genosity; Health Resources and Services Administration (Contract No. HHSH250201500001I/HHSH25034003T/0003); Helix; Illumina, Inc.; The Jackson Laboratory; Janssen Research & Development, LLC; Merck & Co., Inc. (Contract No. CMO-180815-002787); Myriad Women's Health; National Institutes of Health (Contract No. HHSN263201800029I/Order No. HHSN26300010): All of Us Research Program, National Cancer Institute, National Human Genome Research Institute, National Institute of Mental Health, National Institute of Nursing Research, National Institute on Aging, Office of Disease Prevention; National Society of Genetic Counselors; Pfizer Inc.; Regeneron; The University of Vermont Health Network Medical Group; and Vibrent Health. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. |
| Contents |
Introduction and Workshop Overview -- Understanding Consumer Genomics Use -- Exploring the Role of Diversity and Health Disparities in Consumer Genomics -- Integration Within Scientific and Medical Communities -- Regulatory and Health Policy Issues -- How Can Consumer Genomics Be Better Integrated to Improve Health? |
| Local Note |
eBooks on EBSCOhost EBSCO eBook Subscription Academic Collection - North America |
| Subject |
Genomics -- Congresses.
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Genomics. |
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Human chromosome abnormalities -- Diagnosis -- Congresses.
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Human chromosome abnormalities -- Diagnosis. |
| Genre/Form |
Congress.
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Electronic books.
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Conference papers and proceedings.
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Technical reports.
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Technical reports.
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Conference papers and proceedings.
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| Added Author |
Addie, Siobhan, rapporteur.
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Alper, Joe, rapporteur.
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Beachy, Sarah H., rapporteur.
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National Academies of Sciences, Engineering, and Medicine (U.S.). Roundtable on Genomics and Precision Health, issuing body.
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Exploring the Current Landscape of Consumer Genomics (Workshop) (2019 : Washington, D.C.)
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| Other Form: |
Print version: National Academies of Sciences, Engineering, and Medicine. Exploring the Current Landscape of Consumer Genomics : Proceedings of a Workshop. Washington, D.C. : National Academies Press, ©2020 9780309673037 |
| ISBN |
9780309673044 |
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0309673046 |
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9780309673068 (electronic book) |
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0309673062 (electronic book) |
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9780309673037 |
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0309673038 |
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