{"id":301,"date":"2021-03-17T17:57:25","date_gmt":"2021-03-17T17:57:25","guid":{"rendered":"https:\/\/terrabioappdev.wpenginepowered.com\/keeping-the-promise-of-data-sharing\/"},"modified":"2023-12-27T04:54:35","modified_gmt":"2023-12-27T04:54:35","slug":"keeping-the-promise-of-data-sharing","status":"publish","type":"post","link":"https:\/\/terra.bio\/keeping-the-promise-of-data-sharing\/","title":{"rendered":"Keeping the promise of data sharing is hard \u2014 and worth it"},"content":{"rendered":"<p><i><span style=\"font-weight: 400;\">Dr. Clare Bernard is Head of Product in the Data Sciences Platform at the <strong>Broad Institute<\/strong>. In this blog post, she shares a commentary written with David Glazer, Terra Chief Technology Officer at <strong>Verily<\/strong>, and Dr. Greg Moore, Corporate Vice President of <strong>Microsoft Health &amp; Life Sciences<\/strong>, reflecting on a recently published Nature News feature titled <strong><a href=\"https:\/\/www.nature.com\/articles\/d41586-021-00331-5\">&#8220;The broken promise that undermines human genome research&#8221;<\/a><\/strong>. The article<\/span><\/i><i><span style=\"font-weight: 400;\"> chronicles key milestones in genomics starting from the early days of the Human Genome Project; it highlights the importance of the project&#8217;s foundational data sharing principles, as well as the challenges the field faces moving forward.\u00a0<\/span><\/i><\/p>\n<p>&nbsp;<\/p>\n<hr \/>\n<blockquote><p>&nbsp;<\/p>\n<h2><span style=\"color: #008000;\">&#8220;Data sharing was a core principle that led to the success of the Human Genome Project 20 years ago. Now scientists are struggling to keep information free.&#8221; <\/span><\/h2>\n<p><span style=\"color: #008000;\">\u2014 Kendall Powell, Nature News<\/span><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<p><strong>In our work with biomedical data, we are fortunate to count many of the experts quoted in the article as friends and colleagues. We agree genomic data sharing is not yet living up to its promise, yet are optimistic about the emergence of new approaches and platforms.<\/strong><\/p>\n<p><span style=\"font-weight: 400;\">We believe data sharing is a fundamental responsibility when working with human-sourced data. Honoring the people who volunteer data requires sharing it <\/span><span style=\"font-weight: 400;\">wisely<\/span><span style=\"font-weight: 400;\"> and <\/span><span style=\"font-weight: 400;\">widely<\/span><span style=\"font-weight: 400;\">. Wise sharing means ensuring data is only used for intended agreed-on purposes; wide sharing means ensuring data IS USED. People want the data they make available for research to do good \u2013 it\u2019s our shared responsibility to respect their wishes.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Our work with the <\/span><a href=\"https:\/\/anvilproject.org\/\"><span style=\"font-weight: 400;\">AnVIL community<\/span><\/a><span style=\"font-weight: 400;\">, using the <\/span><a href=\"https:\/\/terra.bio\/\"><span style=\"font-weight: 400;\">Terra research platform<\/span><\/a><span style=\"font-weight: 400;\">, supports these dual goals of wise and wide sharing. By embracing GA4GH standards and modular design, AnVIL ensures data isn\u2019t trapped by technology. By bringing researchers to shared cloud-hosted data, AnVIL widens access via lower cost and complexity, and increases security via central authentication and auditing. And by supporting collaborative analysis, AnVIL lets researchers build on each other\u2019s success, rather than reinvent the same wheels.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">As global data volumes continue to grow, fulfilling the original promise of genomic data sharing becomes ever more challenging \u2014 and ever more important. Fortunately, the platform and standards used for AnVIL are also being used for other large datasets \u2013 the <\/span><a href=\"https:\/\/allofus.nih.gov\/\"><i><span style=\"font-weight: 400;\">All of Us<\/span><\/i><span style=\"font-weight: 400;\"> Research Program<\/span><\/a><span style=\"font-weight: 400;\">, <\/span><a href=\"https:\/\/biodatacatalyst.nhlbi.nih.gov\/\"><span style=\"font-weight: 400;\">BioData Catalyst<\/span><\/a><span style=\"font-weight: 400;\">, and more. We look forward to continuing to work with the community to keep the promise.<\/span><\/p>\n<p>&nbsp;<\/p>\n<hr \/>\n<p><i><span style=\"font-weight: 400;\">Citation: &#8220;The broken promise that undermines human genome research.&#8221; Nature 590, 198-201 (2021), doi: <a href=\"https:\/\/doi.org\/10.1038\/d41586-021-00331-5\">https:\/\/doi.org\/10.1038\/d41586-021-00331-5<\/a>.<\/span><\/i><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A commentary from the Terra partners leadership on a recently published Nature News feature titled &#8220;The broken promise that undermines human genome research&#8221;.<\/p>\n","protected":false},"author":18,"featured_media":302,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[18,31,106,13,26],"tags":[41,107,82,108,109],"class_list":["post-301","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-data","category-ecosystem","category-genomics","category-guest-author","category-interoperability","tag-anvil","tag-data-sharing","tag-ga4gh","tag-human-genome-project","tag-nature-news"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.0 - 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