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GA4GH: International policies and standards for data sharing across genomic research and healthcare
The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molec...
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8774288/ https://www.ncbi.nlm.nih.gov/pubmed/35072136 http://dx.doi.org/10.1016/j.xgen.2021.100029 |
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author | Rehm, Heidi L. Page, Angela J.H. Smith, Lindsay Adams, Jeremy B. Alterovitz, Gil Babb, Lawrence J. Barkley, Maxmillian P. Baudis, Michael Beauvais, Michael J.S. Beck, Tim Beckmann, Jacques S. Beltran, Sergi Bernick, David Bernier, Alexander Bonfield, James K. Boughtwood, Tiffany F. Bourque, Guillaume Bowers, Sarion R. Brookes, Anthony J. Brudno, Michael Brush, Matthew H. Bujold, David Burdett, Tony Buske, Orion J. Cabili, Moran N. Cameron, Daniel L. Carroll, Robert J. Casas-Silva, Esmeralda Chakravarty, Debyani Chaudhari, Bimal P. Chen, Shu Hui Cherry, J. Michael Chung, Justina Cline, Melissa Clissold, Hayley L. Cook-Deegan, Robert M. Courtot, Mélanie Cunningham, Fiona Cupak, Miro Davies, Robert M. Denisko, Danielle Doerr, Megan J. Dolman, Lena I. Dove, Edward S. Dursi, L. Jonathan Dyke, Stephanie O.M. Eddy, James A. Eilbeck, Karen Ellrott, Kyle P. Fairley, Susan Fakhro, Khalid A. Firth, Helen V. Fitzsimons, Michael S. Fiume, Marc Flicek, Paul Fore, Ian M. Freeberg, Mallory A. Freimuth, Robert R. Fromont, Lauren A. Fuerth, Jonathan Gaff, Clara L. Gan, Weiniu Ghanaim, Elena M. Glazer, David Green, Robert C. Griffith, Malachi Griffith, Obi L. Grossman, Robert L. Groza, Tudor Guidry Auvil, Jaime M. Guigó, Roderic Gupta, Dipayan Haendel, Melissa A. Hamosh, Ada Hansen, David P. Hart, Reece K. Hartley, Dean Mitchell Haussler, David Hendricks-Sturrup, Rachele M. Ho, Calvin W.L. Hobb, Ashley E. Hoffman, Michael M. Hofmann, Oliver M. Holub, Petr Hsu, Jacob Shujui Hubaux, Jean-Pierre Hunt, Sarah E. Husami, Ammar Jacobsen, Julius O. Jamuar, Saumya S. Janes, Elizabeth L. Jeanson, Francis Jené, Aina Johns, Amber L. Joly, Yann Jones, Steven J.M. Kanitz, Alexander Kato, Kazuto Keane, Thomas M. Kekesi-Lafrance, Kristina Kelleher, Jerome Kerry, Giselle Khor, Seik-Soon Knoppers, Bartha M. Konopko, Melissa A. Kosaki, Kenjiro Kuba, Martin Lawson, Jonathan Leinonen, Rasko Li, Stephanie Lin, Michael F. Linden, Mikael Liu, Xianglin Liyanage, Isuru Udara Lopez, Javier Lucassen, Anneke M. Lukowski, Michael Mann, Alice L. Marshall, John Mattioni, Michele Metke-Jimenez, Alejandro Middleton, Anna Milne, Richard J. Molnár-Gábor, Fruzsina Mulder, Nicola Munoz-Torres, Monica C. Nag, Rishi Nakagawa, Hidewaki Nasir, Jamal Navarro, Arcadi Nelson, Tristan H. Niewielska, Ania Nisselle, Amy Niu, Jeffrey Nyrönen, Tommi H. O’Connor, Brian D. Oesterle, Sabine Ogishima, Soichi Ota Wang, Vivian Paglione, Laura A.D. Palumbo, Emilio Parkinson, Helen E. Philippakis, Anthony A. Pizarro, Angel D. Prlic, Andreas Rambla, Jordi Rendon, Augusto Rider, Renee A. Robinson, Peter N. Rodarmer, Kurt W. Rodriguez, Laura Lyman Rubin, Alan F. Rueda, Manuel Rushton, Gregory A. Ryan, Rosalyn S. Saunders, Gary I. Schuilenburg, Helen Schwede, Torsten Scollen, Serena Senf, Alexander Sheffield, Nathan C. Skantharajah, Neerjah Smith, Albert V. Sofia, Heidi J. Spalding, Dylan Spurdle, Amanda B. Stark, Zornitza Stein, Lincoln D. Suematsu, Makoto Tan, Patrick Tedds, Jonathan A. Thomson, Alastair A. Thorogood, Adrian Tickle, Timothy L. Tokunaga, Katsushi Törnroos, Juha Torrents, David Upchurch, Sean Valencia, Alfonso Guimera, Roman Valls Vamathevan, Jessica Varma, Susheel Vears, Danya F. Viner, Coby Voisin, Craig Wagner, Alex H. Wallace, Susan E. Walsh, Brian P. Williams, Marc S. Winkler, Eva C. Wold, Barbara J. Wood, Grant M. Woolley, J. Patrick Yamasaki, Chisato Yates, Andrew D. Yung, Christina K. Zass, Lyndon J. Zaytseva, Ksenia Zhang, Junjun Goodhand, Peter North, Kathryn Birney, Ewan |
author_facet | Rehm, Heidi L. Page, Angela J.H. Smith, Lindsay Adams, Jeremy B. Alterovitz, Gil Babb, Lawrence J. Barkley, Maxmillian P. Baudis, Michael Beauvais, Michael J.S. Beck, Tim Beckmann, Jacques S. Beltran, Sergi Bernick, David Bernier, Alexander Bonfield, James K. Boughtwood, Tiffany F. Bourque, Guillaume Bowers, Sarion R. Brookes, Anthony J. Brudno, Michael Brush, Matthew H. Bujold, David Burdett, Tony Buske, Orion J. Cabili, Moran N. Cameron, Daniel L. Carroll, Robert J. Casas-Silva, Esmeralda Chakravarty, Debyani Chaudhari, Bimal P. Chen, Shu Hui Cherry, J. Michael Chung, Justina Cline, Melissa Clissold, Hayley L. Cook-Deegan, Robert M. Courtot, Mélanie Cunningham, Fiona Cupak, Miro Davies, Robert M. Denisko, Danielle Doerr, Megan J. Dolman, Lena I. Dove, Edward S. Dursi, L. Jonathan Dyke, Stephanie O.M. Eddy, James A. Eilbeck, Karen Ellrott, Kyle P. Fairley, Susan Fakhro, Khalid A. Firth, Helen V. Fitzsimons, Michael S. Fiume, Marc Flicek, Paul Fore, Ian M. Freeberg, Mallory A. Freimuth, Robert R. Fromont, Lauren A. Fuerth, Jonathan Gaff, Clara L. Gan, Weiniu Ghanaim, Elena M. Glazer, David Green, Robert C. Griffith, Malachi Griffith, Obi L. Grossman, Robert L. Groza, Tudor Guidry Auvil, Jaime M. Guigó, Roderic Gupta, Dipayan Haendel, Melissa A. Hamosh, Ada Hansen, David P. Hart, Reece K. Hartley, Dean Mitchell Haussler, David Hendricks-Sturrup, Rachele M. Ho, Calvin W.L. Hobb, Ashley E. Hoffman, Michael M. Hofmann, Oliver M. Holub, Petr Hsu, Jacob Shujui Hubaux, Jean-Pierre Hunt, Sarah E. Husami, Ammar Jacobsen, Julius O. Jamuar, Saumya S. Janes, Elizabeth L. Jeanson, Francis Jené, Aina Johns, Amber L. Joly, Yann Jones, Steven J.M. Kanitz, Alexander Kato, Kazuto Keane, Thomas M. Kekesi-Lafrance, Kristina Kelleher, Jerome Kerry, Giselle Khor, Seik-Soon Knoppers, Bartha M. Konopko, Melissa A. Kosaki, Kenjiro Kuba, Martin Lawson, Jonathan Leinonen, Rasko Li, Stephanie Lin, Michael F. Linden, Mikael Liu, Xianglin Liyanage, Isuru Udara Lopez, Javier Lucassen, Anneke M. Lukowski, Michael Mann, Alice L. Marshall, John Mattioni, Michele Metke-Jimenez, Alejandro Middleton, Anna Milne, Richard J. Molnár-Gábor, Fruzsina Mulder, Nicola Munoz-Torres, Monica C. Nag, Rishi Nakagawa, Hidewaki Nasir, Jamal Navarro, Arcadi Nelson, Tristan H. Niewielska, Ania Nisselle, Amy Niu, Jeffrey Nyrönen, Tommi H. O’Connor, Brian D. Oesterle, Sabine Ogishima, Soichi Ota Wang, Vivian Paglione, Laura A.D. Palumbo, Emilio Parkinson, Helen E. Philippakis, Anthony A. Pizarro, Angel D. Prlic, Andreas Rambla, Jordi Rendon, Augusto Rider, Renee A. Robinson, Peter N. Rodarmer, Kurt W. Rodriguez, Laura Lyman Rubin, Alan F. Rueda, Manuel Rushton, Gregory A. Ryan, Rosalyn S. Saunders, Gary I. Schuilenburg, Helen Schwede, Torsten Scollen, Serena Senf, Alexander Sheffield, Nathan C. Skantharajah, Neerjah Smith, Albert V. Sofia, Heidi J. Spalding, Dylan Spurdle, Amanda B. Stark, Zornitza Stein, Lincoln D. Suematsu, Makoto Tan, Patrick Tedds, Jonathan A. Thomson, Alastair A. Thorogood, Adrian Tickle, Timothy L. Tokunaga, Katsushi Törnroos, Juha Torrents, David Upchurch, Sean Valencia, Alfonso Guimera, Roman Valls Vamathevan, Jessica Varma, Susheel Vears, Danya F. Viner, Coby Voisin, Craig Wagner, Alex H. Wallace, Susan E. Walsh, Brian P. Williams, Marc S. Winkler, Eva C. Wold, Barbara J. Wood, Grant M. Woolley, J. Patrick Yamasaki, Chisato Yates, Andrew D. Yung, Christina K. Zass, Lyndon J. Zaytseva, Ksenia Zhang, Junjun Goodhand, Peter North, Kathryn Birney, Ewan |
author_sort | Rehm, Heidi L. |
collection | PubMed |
description | The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity. In this perspective, we present the GA4GH strategies for addressing the major challenges of this data revolution. We describe the GA4GH organization, which is fueled by the development efforts of eight Work Streams and informed by the needs of 24 Driver Projects and other key stakeholders. We present the GA4GH suite of secure, interoperable technical standards and policy frameworks and review the current status of standards, their relevance to key domains of research and clinical care, and future plans of GA4GH. Broad international participation in building, adopting, and deploying GA4GH standards and frameworks will catalyze an unprecedented effort in data sharing that will be critical to advancing genomic medicine and ensuring that all populations can access its benefits. |
format | Online Article Text |
id | pubmed-8774288 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Elsevier |
record_format | MEDLINE/PubMed |
spelling | pubmed-87742882022-01-20 GA4GH: International policies and standards for data sharing across genomic research and healthcare Rehm, Heidi L. Page, Angela J.H. Smith, Lindsay Adams, Jeremy B. Alterovitz, Gil Babb, Lawrence J. Barkley, Maxmillian P. Baudis, Michael Beauvais, Michael J.S. Beck, Tim Beckmann, Jacques S. Beltran, Sergi Bernick, David Bernier, Alexander Bonfield, James K. Boughtwood, Tiffany F. Bourque, Guillaume Bowers, Sarion R. Brookes, Anthony J. Brudno, Michael Brush, Matthew H. Bujold, David Burdett, Tony Buske, Orion J. Cabili, Moran N. Cameron, Daniel L. Carroll, Robert J. Casas-Silva, Esmeralda Chakravarty, Debyani Chaudhari, Bimal P. Chen, Shu Hui Cherry, J. Michael Chung, Justina Cline, Melissa Clissold, Hayley L. Cook-Deegan, Robert M. Courtot, Mélanie Cunningham, Fiona Cupak, Miro Davies, Robert M. Denisko, Danielle Doerr, Megan J. Dolman, Lena I. Dove, Edward S. Dursi, L. Jonathan Dyke, Stephanie O.M. Eddy, James A. Eilbeck, Karen Ellrott, Kyle P. Fairley, Susan Fakhro, Khalid A. Firth, Helen V. Fitzsimons, Michael S. Fiume, Marc Flicek, Paul Fore, Ian M. Freeberg, Mallory A. Freimuth, Robert R. Fromont, Lauren A. Fuerth, Jonathan Gaff, Clara L. Gan, Weiniu Ghanaim, Elena M. Glazer, David Green, Robert C. Griffith, Malachi Griffith, Obi L. Grossman, Robert L. Groza, Tudor Guidry Auvil, Jaime M. Guigó, Roderic Gupta, Dipayan Haendel, Melissa A. Hamosh, Ada Hansen, David P. Hart, Reece K. Hartley, Dean Mitchell Haussler, David Hendricks-Sturrup, Rachele M. Ho, Calvin W.L. Hobb, Ashley E. Hoffman, Michael M. Hofmann, Oliver M. Holub, Petr Hsu, Jacob Shujui Hubaux, Jean-Pierre Hunt, Sarah E. Husami, Ammar Jacobsen, Julius O. Jamuar, Saumya S. Janes, Elizabeth L. Jeanson, Francis Jené, Aina Johns, Amber L. Joly, Yann Jones, Steven J.M. Kanitz, Alexander Kato, Kazuto Keane, Thomas M. Kekesi-Lafrance, Kristina Kelleher, Jerome Kerry, Giselle Khor, Seik-Soon Knoppers, Bartha M. Konopko, Melissa A. Kosaki, Kenjiro Kuba, Martin Lawson, Jonathan Leinonen, Rasko Li, Stephanie Lin, Michael F. Linden, Mikael Liu, Xianglin Liyanage, Isuru Udara Lopez, Javier Lucassen, Anneke M. Lukowski, Michael Mann, Alice L. Marshall, John Mattioni, Michele Metke-Jimenez, Alejandro Middleton, Anna Milne, Richard J. Molnár-Gábor, Fruzsina Mulder, Nicola Munoz-Torres, Monica C. Nag, Rishi Nakagawa, Hidewaki Nasir, Jamal Navarro, Arcadi Nelson, Tristan H. Niewielska, Ania Nisselle, Amy Niu, Jeffrey Nyrönen, Tommi H. O’Connor, Brian D. Oesterle, Sabine Ogishima, Soichi Ota Wang, Vivian Paglione, Laura A.D. Palumbo, Emilio Parkinson, Helen E. Philippakis, Anthony A. Pizarro, Angel D. Prlic, Andreas Rambla, Jordi Rendon, Augusto Rider, Renee A. Robinson, Peter N. Rodarmer, Kurt W. Rodriguez, Laura Lyman Rubin, Alan F. Rueda, Manuel Rushton, Gregory A. Ryan, Rosalyn S. Saunders, Gary I. Schuilenburg, Helen Schwede, Torsten Scollen, Serena Senf, Alexander Sheffield, Nathan C. Skantharajah, Neerjah Smith, Albert V. Sofia, Heidi J. Spalding, Dylan Spurdle, Amanda B. Stark, Zornitza Stein, Lincoln D. Suematsu, Makoto Tan, Patrick Tedds, Jonathan A. Thomson, Alastair A. Thorogood, Adrian Tickle, Timothy L. Tokunaga, Katsushi Törnroos, Juha Torrents, David Upchurch, Sean Valencia, Alfonso Guimera, Roman Valls Vamathevan, Jessica Varma, Susheel Vears, Danya F. Viner, Coby Voisin, Craig Wagner, Alex H. Wallace, Susan E. Walsh, Brian P. Williams, Marc S. Winkler, Eva C. Wold, Barbara J. Wood, Grant M. Woolley, J. Patrick Yamasaki, Chisato Yates, Andrew D. Yung, Christina K. Zass, Lyndon J. Zaytseva, Ksenia Zhang, Junjun Goodhand, Peter North, Kathryn Birney, Ewan Cell Genom Perspective The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity. In this perspective, we present the GA4GH strategies for addressing the major challenges of this data revolution. We describe the GA4GH organization, which is fueled by the development efforts of eight Work Streams and informed by the needs of 24 Driver Projects and other key stakeholders. We present the GA4GH suite of secure, interoperable technical standards and policy frameworks and review the current status of standards, their relevance to key domains of research and clinical care, and future plans of GA4GH. Broad international participation in building, adopting, and deploying GA4GH standards and frameworks will catalyze an unprecedented effort in data sharing that will be critical to advancing genomic medicine and ensuring that all populations can access its benefits. Elsevier 2021-11-10 /pmc/articles/PMC8774288/ /pubmed/35072136 http://dx.doi.org/10.1016/j.xgen.2021.100029 Text en © 2021 The Authors https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). |
spellingShingle | Perspective Rehm, Heidi L. Page, Angela J.H. Smith, Lindsay Adams, Jeremy B. Alterovitz, Gil Babb, Lawrence J. Barkley, Maxmillian P. Baudis, Michael Beauvais, Michael J.S. Beck, Tim Beckmann, Jacques S. Beltran, Sergi Bernick, David Bernier, Alexander Bonfield, James K. Boughtwood, Tiffany F. Bourque, Guillaume Bowers, Sarion R. Brookes, Anthony J. Brudno, Michael Brush, Matthew H. Bujold, David Burdett, Tony Buske, Orion J. Cabili, Moran N. Cameron, Daniel L. Carroll, Robert J. Casas-Silva, Esmeralda Chakravarty, Debyani Chaudhari, Bimal P. Chen, Shu Hui Cherry, J. Michael Chung, Justina Cline, Melissa Clissold, Hayley L. Cook-Deegan, Robert M. Courtot, Mélanie Cunningham, Fiona Cupak, Miro Davies, Robert M. Denisko, Danielle Doerr, Megan J. Dolman, Lena I. Dove, Edward S. Dursi, L. Jonathan Dyke, Stephanie O.M. Eddy, James A. Eilbeck, Karen Ellrott, Kyle P. Fairley, Susan Fakhro, Khalid A. Firth, Helen V. Fitzsimons, Michael S. Fiume, Marc Flicek, Paul Fore, Ian M. Freeberg, Mallory A. Freimuth, Robert R. Fromont, Lauren A. Fuerth, Jonathan Gaff, Clara L. Gan, Weiniu Ghanaim, Elena M. Glazer, David Green, Robert C. Griffith, Malachi Griffith, Obi L. Grossman, Robert L. Groza, Tudor Guidry Auvil, Jaime M. Guigó, Roderic Gupta, Dipayan Haendel, Melissa A. Hamosh, Ada Hansen, David P. Hart, Reece K. Hartley, Dean Mitchell Haussler, David Hendricks-Sturrup, Rachele M. Ho, Calvin W.L. Hobb, Ashley E. Hoffman, Michael M. Hofmann, Oliver M. Holub, Petr Hsu, Jacob Shujui Hubaux, Jean-Pierre Hunt, Sarah E. Husami, Ammar Jacobsen, Julius O. Jamuar, Saumya S. Janes, Elizabeth L. Jeanson, Francis Jené, Aina Johns, Amber L. Joly, Yann Jones, Steven J.M. Kanitz, Alexander Kato, Kazuto Keane, Thomas M. Kekesi-Lafrance, Kristina Kelleher, Jerome Kerry, Giselle Khor, Seik-Soon Knoppers, Bartha M. Konopko, Melissa A. Kosaki, Kenjiro Kuba, Martin Lawson, Jonathan Leinonen, Rasko Li, Stephanie Lin, Michael F. Linden, Mikael Liu, Xianglin Liyanage, Isuru Udara Lopez, Javier Lucassen, Anneke M. Lukowski, Michael Mann, Alice L. Marshall, John Mattioni, Michele Metke-Jimenez, Alejandro Middleton, Anna Milne, Richard J. Molnár-Gábor, Fruzsina Mulder, Nicola Munoz-Torres, Monica C. Nag, Rishi Nakagawa, Hidewaki Nasir, Jamal Navarro, Arcadi Nelson, Tristan H. Niewielska, Ania Nisselle, Amy Niu, Jeffrey Nyrönen, Tommi H. O’Connor, Brian D. Oesterle, Sabine Ogishima, Soichi Ota Wang, Vivian Paglione, Laura A.D. Palumbo, Emilio Parkinson, Helen E. Philippakis, Anthony A. Pizarro, Angel D. Prlic, Andreas Rambla, Jordi Rendon, Augusto Rider, Renee A. Robinson, Peter N. Rodarmer, Kurt W. Rodriguez, Laura Lyman Rubin, Alan F. Rueda, Manuel Rushton, Gregory A. Ryan, Rosalyn S. Saunders, Gary I. Schuilenburg, Helen Schwede, Torsten Scollen, Serena Senf, Alexander Sheffield, Nathan C. Skantharajah, Neerjah Smith, Albert V. Sofia, Heidi J. Spalding, Dylan Spurdle, Amanda B. Stark, Zornitza Stein, Lincoln D. Suematsu, Makoto Tan, Patrick Tedds, Jonathan A. Thomson, Alastair A. Thorogood, Adrian Tickle, Timothy L. Tokunaga, Katsushi Törnroos, Juha Torrents, David Upchurch, Sean Valencia, Alfonso Guimera, Roman Valls Vamathevan, Jessica Varma, Susheel Vears, Danya F. Viner, Coby Voisin, Craig Wagner, Alex H. Wallace, Susan E. Walsh, Brian P. Williams, Marc S. Winkler, Eva C. Wold, Barbara J. Wood, Grant M. Woolley, J. Patrick Yamasaki, Chisato Yates, Andrew D. Yung, Christina K. Zass, Lyndon J. Zaytseva, Ksenia Zhang, Junjun Goodhand, Peter North, Kathryn Birney, Ewan GA4GH: International policies and standards for data sharing across genomic research and healthcare |
title | GA4GH: International policies and standards for data sharing across genomic research and healthcare |
title_full | GA4GH: International policies and standards for data sharing across genomic research and healthcare |
title_fullStr | GA4GH: International policies and standards for data sharing across genomic research and healthcare |
title_full_unstemmed | GA4GH: International policies and standards for data sharing across genomic research and healthcare |
title_short | GA4GH: International policies and standards for data sharing across genomic research and healthcare |
title_sort | ga4gh: international policies and standards for data sharing across genomic research and healthcare |
topic | Perspective |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8774288/ https://www.ncbi.nlm.nih.gov/pubmed/35072136 http://dx.doi.org/10.1016/j.xgen.2021.100029 |
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