{"id":510141,"date":"2022-11-15T08:00:02","date_gmt":"2022-11-15T05:00:02","guid":{"rendered":"https:\/\/en.buradabiliyorum.com\/new-guideline-to-help-researchers-and-patients\/"},"modified":"2022-11-15T08:00:02","modified_gmt":"2022-11-15T05:00:02","slug":"new-guideline-to-help-researchers-and-patients","status":"publish","type":"post","link":"https:\/\/buradabiliyorum.com\/en\/new-guideline-to-help-researchers-and-patients\/","title":{"rendered":"#New guideline to help researchers and patients"},"content":{"rendered":"<div id=\"ez-toc-container\" class=\"ez-toc-v2_0_85 counter-hierarchy ez-toc-counter ez-toc-custom ez-toc-container-direction\">\n<p class=\"ez-toc-title\" style=\"cursor:inherit\">Table of Contents<\/p>\n<label for=\"ez-toc-cssicon-toggle-item-6a373bc63400f\" class=\"ez-toc-cssicon-toggle-label\"><span class=\"\"><span class=\"eztoc-hide\" style=\"display:none;\">Toggle<\/span><span class=\"ez-toc-icon-toggle-span\"><svg style=\"fill: #dd3333;color:#dd3333\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" class=\"list-377408\" width=\"20px\" height=\"20px\" viewBox=\"0 0 24 24\" fill=\"none\"><path d=\"M6 6H4v2h2V6zm14 0H8v2h12V6zM4 11h2v2H4v-2zm16 0H8v2h12v-2zM4 16h2v2H4v-2zm16 0H8v2h12v-2z\" fill=\"currentColor\"><\/path><\/svg><svg style=\"fill: #dd3333;color:#dd3333\" class=\"arrow-unsorted-368013\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"10px\" height=\"10px\" viewBox=\"0 0 24 24\" version=\"1.2\" baseProfile=\"tiny\"><path d=\"M18.2 9.3l-6.2-6.3-6.2 6.3c-.2.2-.3.4-.3.7s.1.5.3.7c.2.2.4.3.7.3h11c.3 0 .5-.1.7-.3.2-.2.3-.5.3-.7s-.1-.5-.3-.7zM5.8 14.7l6.2 6.3 6.2-6.3c.2-.2.3-.5.3-.7s-.1-.5-.3-.7c-.2-.2-.4-.3-.7-.3h-11c-.3 0-.5.1-.7.3-.2.2-.3.5-.3.7s.1.5.3.7z\"\/><\/svg><\/span><\/span><\/label><input type=\"checkbox\"  id=\"ez-toc-cssicon-toggle-item-6a373bc63400f\" checked aria-label=\"Toggle\" \/><nav><ul class='ez-toc-list ez-toc-list-level-1 ' ><li class='ez-toc-page-1 ez-toc-heading-level-1'><a class=\"ez-toc-link ez-toc-heading-1\" href=\"https:\/\/buradabiliyorum.com\/en\/new-guideline-to-help-researchers-and-patients\/#%E2%80%9CNew_guideline_to_help_researchers_and_patients%E2%80%9D\" >&#8220;New guideline to help researchers and patients&#8221;<\/a><\/li><\/ul><\/nav><\/div>\n<h1><span class=\"ez-toc-section\" id=\"%E2%80%9CNew_guideline_to_help_researchers_and_patients%E2%80%9D\"><\/span>&#8220;New guideline to help researchers and patients&#8221;<span class=\"ez-toc-section-end\"><\/span><\/h1>\n<div>\n<div class=\"article-gallery lightGallery\">\n<div data-thumb=\"https:\/\/scx1.b-cdn.net\/csz\/news\/tmb\/2022\/genome-1.jpg\" data-src=\"https:\/\/scx2.b-cdn.net\/gfx\/news\/hires\/2022\/genome-1.jpg\" data-sub-html=\"Credit: Pixabay\/CC0 Public Domain\">\n<figure class=\"article-img\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/scx1.b-cdn.net\/csz\/news\/800a\/2022\/genome-1.jpg\" alt=\"genome\" title=\"Credit: Pixabay\/CC0 Public Domain\" width=\"800\" height=\"530\"\/><figcaption class=\"text-darken text-low-up text-truncate-js text-truncate mt-3\">\n                Credit: Pixabay\/CC0 Public Domain<br \/>\n            <\/figcaption><\/figure>\n<\/div>\n<\/div>\n<p>How can Canada optimize the impact of human genomic sequencing to increase our understanding of disease? New guidance in <i>Canadian Medical Association Journal (CMAJ)<\/i> lays out the key elements for obtaining patient consent for researchers and policymakers in this growing field.\n                                                <\/p>\n<p>                                                                                &#8220;Human genomics\u2014the study of the entirety of a person&#8217;s or population&#8217;s genes\u2014is increasingly being integrated into research and rapidly incorporated into clinical care, including into health records,&#8221; writes Dr. Christopher McMaster, a guideline author and Director of the Institute of Genetics, Canadian Institutes of Health Research (CIHR). <\/p>\n<p>&#8220;If most genomic data obtained in Canada could be accessed and analyzed collectively, the level of understanding of the role of genomics in determining health and predisposition to disease among Canadians would increase substantially.&#8221;<\/p>\n<p>In 2023, a pan-Canadian Human Genome Library (CHGL) will launch as a central resource to share locally held genomic and related health and medical information. Advanced artificial intelligence and machine learning methods can be used to determine which genetic factors contribute to health and disease for people in Canada.<\/p>\n<p>&#8220;Consent is an essential, required tool to enable personalized medicine for Canadians,&#8221; says Dr. McMaster.<\/p>\n<p>To ensure success of the library, a standardized set of core consent elements for human genomics research in Canada is needed to help with <a href=\"https:\/\/buradabiliyorum.com\/en\/category\/download-scripts-themes-apps\/\" data-internallinksmanager029f6b8e52c=\"9\" title=\"Download Scripts &amp; Themes &amp; Apps\" target=\"_blank\" rel=\"noopener\">app<\/a>ropriate research ethics board (REB) approvals and subsequent sharing of genomic and health data. The guideline addresses topics such as research data, international sharing, commercial and future research use, storage, controlled access, reidentification and recontact of participants, and consent of minor participants.<\/p>\n<p>&#8220;Genomic consent core elements will help with transparency for participants in research,&#8221; says Dr. McMaster. &#8220;This guidance will allow researchers to collect human genome data in a consistent manner that explains how participants&#8217; data will be used in the present and future.&#8221;<\/p>\n<p>It will also streamline REB submissions and approvals, an important part of the research process.<\/p>\n<p>&#8220;This guidance will make it easier for clinicians and researchers to determine the essential core elements to put in their REB submissions,&#8221; says Dr. Etienne Richer, a guideline co-author and Associate Scientific Director, CIHR Institute of Genetics. <\/p>\n<p>&#8220;For REBs, it will be clearer what minimal elements to look for when reviewing submissions with genomic components. In the end, we hope that this will accelerate and make the whole process smoother for the benefit of patients and people living in Canada.&#8221;<\/p>\n<p>In a <a rel=\"nofollow noopener\" target=\"_blank\" href=\"https:\/\/www.cmaj.ca\/lookup\/doi\/10.1503\/cmaj.221500\">related commentary<\/a>, Dr. Mackenzie Graham, Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, United Kingdom, writes, &#8220;Although securing informed consent remains an important facet of ethical research, the complexity and uncertainty inherent in current data-driven research means that much of how people&#8217;s data are used is outside of their direct control. Participants ought to be able to make an informed judgment about whether an institution is trustworthy before they trust it with their health data.&#8221;<\/p>\n<div class=\"article-main__more p-4\">\n                                                                                                <strong>More information:<\/strong><br \/>\n                                                Core elements of participant consent documents for Canadian human genomics research and the National Human Genome Library: guidance for policy, <i>Canadian Medical Association Journal<\/i> (2022). <a rel=\"nofollow noopener\" target=\"_blank\" data-doi=\"1\" href=\"https:\/\/dx.doi.org\/10.1503\/cmaj.212063\">DOI: 10.1503\/cmaj.212063<\/a><\/p><\/div>\n<div class=\"d-inline-block text-medium my-4\">\n                                                Provided by<br \/>\n                                                                                                    Canadian Medical Association Journal<br \/>\n                                                                                                        <a rel=\"nofollow noopener\" target=\"_blank\" class=\"icon_open\" href=\"http:\/\/www.cmaj.ca\/\"><br \/>\n                                                        <svg><use href=\"https:\/\/medx.b-cdn.net\/tmpl\/v6\/img\/svg\/sprite.svg#icon_open\" x=\"0\" y=\"0\"\/><\/svg><\/a><\/p><\/div>\n<p>                                        <!-- print only --><\/p>\n<div class=\"d-none d-print-block\">\n<p>\n                                                 <strong>Citation<\/strong>:<br \/>\n                                                 Genomic consent: New guideline to help researchers and patients (2022, November 15)<br \/>\n                                                 retrieved 15 November 2022<br \/>\n                                                 from https:\/\/medicalxpress.com\/<a href=\"https:\/\/buradabiliyorum.com\/en\/category\/news\/\" data-internallinksmanager029f6b8e52c=\"2\" title=\"News\" target=\"_blank\" rel=\"noopener\">news<\/a>\/2022-11-genomic-consent-guideline-patients.html<\/p>\n<p>                                            This document is subject to copyright. Apart from any fair dealing for the purpose of private study or research, no<br \/>\n                                            part may be reproduced without the written permission. The content is provided for information purposes only.<\/p><\/div>\n<\/p><\/div>\n<p><script id=\"facebook-jssdk\" async=\"\" src=\"https:\/\/connect.facebook.net\/en_US\/sdk.js\"><\/script><\/p>\n<blockquote><p><strong><span style=\"color: #ff6600;\">If you liked the article, do not forget to share it with your friends. 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New guidance in Canadian Medical Association Journal (CMAJ) lays out the key elements for obtaining patient consent for researchers and policymakers in this growing field. &#8220;Human genomics\u2014the study&#8230;<\/p>\n","protected":false},"author":1,"featured_media":510142,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"fifu_image_url":"https:\/\/scx2.b-cdn.net\/gfx\/news\/hires\/2022\/genome-1.jpg","fifu_image_alt":"","footnotes":""},"categories":[16],"tags":[],"class_list":["post-510141","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sciencee"],"_links":{"self":[{"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/posts\/510141","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/comments?post=510141"}],"version-history":[{"count":0,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/posts\/510141\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/media\/510142"}],"wp:attachment":[{"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/media?parent=510141"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/categories?post=510141"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/tags?post=510141"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}