Challenges for precision public health communication in the era of genomic medicine |
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| Institution: | 1. Department of Sociology & Anthropology, Ben-Gurion University of the Nagev, Beersheba, Israel;2. Department of Sociology, UCLA, Los Angeles, CA;3. Precision Medicine & Society Program, Department of Sociology, Columbia University, New York, NY;4. Department of Pediatrics, School of Medicine, University of Louisville, Louisville, KY;5. Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, Japan;1. Health Economics Unit, Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Victoria, Australia;2. Australian Genomics Health Alliance, Melbourne, Victoria, Australia;3. Murdoch Children’s Research Institute, Melbourne, Victoria, Australia;4. Victorian Clinical Genetics Services, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia;5. Department of Pediatrics, University of Melbourne, Melbourne, Victoria, Australia;6. Monash Genetics, Monash Health, Melbourne, Victoria, Australia;7. Department of Pediatrics, Monash University, Melbourne, Victoria, Australia;8. Melbourne Genomics Health Alliance, Melbourne, Victoria, Australia;1. Shriners Hospital for Children - Canada, McGill University, Montreal, QC, Canada;2. Children''s Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, ON, Canada;1. School of Women’s and Children’s Health, Medicine, UNSW, Randwick, New South Wales, Australia;2. Graduate School of Health, University of Technology Sydney, Sydney, New South Wales, Australia;3. Murdoch Children’s Research Institute, Parkville, Victoria, Australia;4. Victorian Clinical Genetics Services, Parkville, Victoria, Australia;5. Disability Innovation Institute, UNSW, Sydney, New South Wales, Australia;6. Centre for Clinical Genetics, Sydney Children’s Hospital, Sydney Children’s Hospitals Network, Randwick, New South Wales, Australia;1. Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, University of British Columbia, Vancouver, British Columbia, Canada;2. Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada;3. Division of Neonatology, Department of Paediatrics, University of British Columbia, Vancouver, British Columbia, Canada;4. Centre for Health Evaluation and Outcome Sciences, St. Paul’s Hospital, Vancouver, British Columbia, Canada;1. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada;2. Genomics Health Services and Policy Research Program, Li Ka Shing Knowledge Institute, St. Michael''s Hospital, Unity Health Toronto, Toronto, Ontario, Canada;3. Lunenfeld Tanenbaum Research Institute, Sinai Health, Toronto, Ontario, Canada;4. Pathology and Laboratory Medicine, Mount Sinai Hospital, Sinai Health, Toronto, Ontario, Canada;5. Department of Laboratory Medicine and Pathobiology, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada;6. Li Ka Shing Knowledge Institute, St. Michael''s Hospital, Unity Health Toronto, Toronto, Ontario, Canada;7. Department of Surgery, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada;8. Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Victoria, Australia;9. Ontario Institute for Cancer Research, Toronto, Ontario, Canada;1. Department of Genetics, Cell Biology, and Development, College of Biological Sciences, University of Minnesota, Minneapolis, MN;2. Department of Biology, Macalester College, Saint Paul, MN;3. Libraries, University of Minnesota, Minneapolis, MN |
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| Abstract: | Although still in the early stages of development, the advent of fast, high-output, and cost-effective next-generation DNA sequencing technology is moving precision medicine into public health. Before this shift toward next-generation sequencing in public health settings, individual patients met geneticists after showing symptoms and through limited family screening. In the new era of precision public health, everyone is a possible participant in genetic sequencing, simply by being born (newborn screening), by donating blood (biobanking), or through population screening. These initiatives are increasingly offered to individuals throughout their life and more individuals are encountering opportunities to use DNA sequencing. This article raises awareness of these growing areas and calls for different models of public engagement and communication about genomics, including screening asymptomatic populations, obtaining consent for unspecified and unforeseen future uses of genomic data, and managing variants of uncertain significance. Given that such communication challenges loom large, established norms of practice in genomic medicine and research should be reconsidered. |
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| Keywords: | Biobanking Communication Newborn screening New generation sequencing Precision medicine |
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