{"id":6685,"date":"2023-05-01T09:55:23","date_gmt":"2023-05-01T13:55:23","guid":{"rendered":"https:\/\/statepi.jhsph.edu\/ckid\/?page_id=6685"},"modified":"2023-05-01T10:02:48","modified_gmt":"2023-05-01T14:02:48","slug":"ethics","status":"publish","type":"page","link":"https:\/\/statepi.jhsph.edu\/ckid\/investigator-resources\/ethics\/","title":{"rendered":"CKiD Ethics Substudy"},"content":{"rendered":"\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-kgjqjbur-53259f21b3e7fe17e60c2b606fbab044\">\n.flex_column.av-kgjqjbur-53259f21b3e7fe17e60c2b606fbab044{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-kgjqjbur-53259f21b3e7fe17e60c2b606fbab044 av_one_full  avia-builder-el-0  el_before_av_layout_row  avia-builder-el-no-sibling  first flex_column_div av-zero-column-padding  '     ><section  class='av_textblock_section av-kgjqiick-3ffb2b8d924e33636e063ef1c041c7e8 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h2 style=\"text-align: center;\">CKiD Ethics and Disclosure of Genomic Research Results Sub-study<\/h2>\n<\/div><\/section><\/div>\n<\/div><\/div><\/div><!-- close content main div --><\/div><\/div><div id='av-layout-grid-1'  class='av-layout-grid-container av-h1gy8-14f80c135dc8eadf308a71bdf399aac8 entry-content-wrapper main_color av-flex-cells  avia-builder-el-2  el_after_av_one_full  el_before_av_layout_row  grid-row-not-first  container_wrap sidebar_right'  >\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-bfs5c-159b53207c1895f0c66d616c883f5d3a\">\n.flex_cell.av-bfs5c-159b53207c1895f0c66d616c883f5d3a{\nvertical-align:top;\n}\n.responsive #top #wrap_all .flex_cell.av-bfs5c-159b53207c1895f0c66d616c883f5d3a{\npadding:0px 0px 5px 30px !important;\n}\n<\/style>\n<div class='flex_cell av-bfs5c-159b53207c1895f0c66d616c883f5d3a av-gridrow-cell av_four_fifth no_margin  avia-builder-el-3  el_before_av_cell_one_fifth  avia-builder-el-first  content-align-top'  ><div class='flex_cell_inner'>\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-2tvyb7-319bd6cece273e5f2e201d356cf659de\">\n.flex_column.av-2tvyb7-319bd6cece273e5f2e201d356cf659de{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 100px;\n}\n<\/style>\n<div  class='flex_column av-2tvyb7-319bd6cece273e5f2e201d356cf659de av_one_full  avia-builder-el-4  avia-builder-el-no-sibling  first flex_column_div  '     ><section  class='av_textblock_section av-lgwl5q62-8f48fd31ba82c1c06fca0c3e5ba5ce2e '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><p>CKiD is revising its policy regarding the return of individual research results from genomic testing.\u00a0 Currently, we plan to disclose kidney-specific genomic results that are pathogenic, while further assessing how to approach variants of uncertain significance (VUS).<\/p>\n<p>CKiD study coordinators are inviting CKiD participants or their parent\/legal guardian to take an online survey (~20- 30 min) about their values and opinions regarding disclosure of results, especially VUS.<\/p>\n<p>We are excited to share with you two short videos that we have developed about pathogenic and uncertain results, which are embedded in the survey. These videos are intended to help families better understand what genomic research is and to think about whether and how they would like to receive genomic research results.<\/p>\n<\/div><\/section><\/div>\n<\/div><\/div>\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-kgk2zbmp-1c2ff3f2910b3a905c32742677167193\">\n.flex_cell.av-kgk2zbmp-1c2ff3f2910b3a905c32742677167193{\nvertical-align:top;\n}\n.responsive #top #wrap_all .flex_cell.av-kgk2zbmp-1c2ff3f2910b3a905c32742677167193{\npadding:0px 200px 30px 30px !important;\n}\n<\/style>\n<div class='flex_cell av-kgk2zbmp-1c2ff3f2910b3a905c32742677167193 av-gridrow-cell av_one_fifth no_margin  avia-builder-el-6  el_after_av_cell_four_fifth  avia-builder-el-last  content-align-top'  ><div class='flex_cell_inner'><\/div><\/div><\/div><div id='av-layout-grid-2'  class='av-layout-grid-container av-lgwlhm2g-578eaf1c9247fdb4978c88c1947511ec entry-content-wrapper main_color av-flex-cells  avia-builder-el-7  el_after_av_layout_row  avia-builder-el-last  grid-row-not-first  container_wrap sidebar_right'  >\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-lgwldys8-c9a44c8e6477c84190770f57f22aeae3\">\n.flex_cell.av-lgwldys8-c9a44c8e6477c84190770f57f22aeae3{\nvertical-align:top;\n}\n.responsive #top #wrap_all .flex_cell.av-lgwldys8-c9a44c8e6477c84190770f57f22aeae3{\npadding:0 50px 0 50px !important;\n}\n<\/style>\n<div class='flex_cell av-lgwldys8-c9a44c8e6477c84190770f57f22aeae3 av-gridrow-cell av_one_half no_margin  avia-builder-el-8  el_before_av_cell_one_half  avia-builder-el-first  content-align-top'  ><div class='flex_cell_inner'><div  class='flex_column av-4m1q25-529ed3408b8f5667514828ac96b32ee8 av_one_full  avia-builder-el-9  avia-builder-el-no-sibling  first flex_column_div  '     ><p><section  class='av_textblock_section av-lgwl86jt-f2821d0f2be6978e0c49039da5449a1a '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><p>Video 1- Pathogenic Results<\/p>\n<\/div><\/section><br \/>\n<div  class='avia-video av-lgwl2zaq-1b5c7306801660ebcbe4f4d2fd5b2b01 avia-video-16-9 av-no-preview-image avia-video-load-always av-lazyload-immediate av-lazyload-video-embed'  itemprop=\"video\" itemtype=\"https:\/\/schema.org\/VideoObject\"  data-original_url='https:\/\/www.youtube.com\/watch?v=Vc9bta7vGLM'><script type='text\/html' class='av-video-tmpl'><div class='avia-iframe-wrap'><iframe loading=\"lazy\" title=\"CKiD Ethics Study Video 1 -- Pathogenic Results\" width=\"1500\" height=\"844\" src=\"https:\/\/www.youtube.com\/embed\/Vc9bta7vGLM?feature=oembed&autoplay=0&loop=0&controls=1&mute=0\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><\/div><\/script><div class='av-click-to-play-overlay'><div class=\"avia_playpause_icon\"><\/div><\/div><\/div><\/p><\/div>\n<\/div><\/div>\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-lgwlea54-1654ed2683b6c3c42cb2c188b7f8fb06\">\n.flex_cell.av-lgwlea54-1654ed2683b6c3c42cb2c188b7f8fb06{\nvertical-align:top;\n}\n.responsive #top #wrap_all .flex_cell.av-lgwlea54-1654ed2683b6c3c42cb2c188b7f8fb06{\npadding:0 50px 0 50px !important;\n}\n<\/style>\n<div class='flex_cell av-lgwlea54-1654ed2683b6c3c42cb2c188b7f8fb06 av-gridrow-cell av_one_half no_margin  avia-builder-el-12  el_after_av_cell_one_half  avia-builder-el-last  content-align-top'  ><div class='flex_cell_inner'><div  class='flex_column av-2rye71-4bbdb45abc5befe616f19f1f083dd573 av_one_full  avia-builder-el-13  avia-builder-el-no-sibling  first flex_column_div  '     ><p><section  class='av_textblock_section av-lgwl8gz4-01f596b9dae0f91fb088968a3aabb988 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><p>Video 2- Uncertain Results<\/p>\n<\/div><\/section><br \/>\n<div  class='avia-video av-lgwl7n6p-eb38af3443aae8bf30f8c7a407125a13 avia-video-16-9 av-no-preview-image avia-video-load-always av-lazyload-immediate av-lazyload-video-embed'  itemprop=\"video\" itemtype=\"https:\/\/schema.org\/VideoObject\"  data-original_url='https:\/\/youtu.be\/N4D-NS6ZBZI '><script type='text\/html' class='av-video-tmpl'><div class='avia-iframe-wrap'><iframe loading=\"lazy\" title=\"CKiD Ethics Study Video 2 -- Uncertain Results\" width=\"1500\" height=\"844\" src=\"https:\/\/www.youtube.com\/embed\/N4D-NS6ZBZI?feature=oembed&autoplay=0&loop=0&controls=1&mute=0\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><\/div><\/script><div class='av-click-to-play-overlay'><div class=\"avia_playpause_icon\"><\/div><\/div><\/div><\/p><\/div>\n<\/div><\/div>\n<\/div><\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":1091,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"page_page-category":[],"page_page-tag":[],"class_list":["post-6685","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages\/6685","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/comments?post=6685"}],"version-history":[{"count":18,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages\/6685\/revisions"}],"predecessor-version":[{"id":6705,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages\/6685\/revisions\/6705"}],"up":[{"embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages\/1091"}],"wp:attachment":[{"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/media?parent=6685"}],"wp:term":[{"taxonomy":"page_page-category","embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/page_page-category?post=6685"},{"taxonomy":"page_page-tag","embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/page_page-tag?post=6685"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}