{"id":1057,"date":"2021-08-06T08:41:56","date_gmt":"2021-08-06T12:41:56","guid":{"rendered":"https:\/\/geneticspolicy.nccrcg.org\/?post_type=policy-area&#038;p=1057"},"modified":"2024-09-19T12:08:24","modified_gmt":"2024-09-19T16:08:24","slug":"population-screening","status":"publish","type":"policy-area","link":"https:\/\/geneticspolicy.nccrcg.org\/policy-area\/population-screening\/","title":{"rendered":"Population Screening"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; fullwidth=&#8221;on&#8221; theme_builder_area=&#8221;post_content&#8221; _builder_version=&#8221;4.17.3&#8243; _module_preset=&#8221;default&#8221;][et_pb_fullwidth_header _builder_version=&#8221;4.17.3&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#cc1b00&#8243; custom_padding=&#8221;4px||1px|||&#8221; global_colors_info=&#8221;{}&#8221; theme_builder_area=&#8221;post_content&#8221;]<\/p>\n<p>From 2004 to 2024, the Health Resources and Services Administration (HRSA) funded the National Coordinating Center for the Regional Genetics Networks (NCC). NCC developed and maintained the Genetics Policy Hub.<\/p>\n<p>&nbsp;<\/p>\n<p>With the conclusion of NCC funding, the Genetics Policy Hub (GPH) will no longer be updated or maintained. Information on GPH should be used for historical reference only.<\/p>\n<p>[\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; fullwidth=&#8221;on&#8221; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; background_enable_image=&#8221;off&#8221; top_divider_color=&#8221;#ffffff&#8221; top_divider_height=&#8221;15px&#8221; bottom_divider_style=&#8221;asymmetric&#8221; bottom_divider_color=&#8221;#ffffff&#8221; bottom_divider_height=&#8221;25px&#8221; bottom_divider_repeat=&#8221;1x&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_fullwidth_post_title meta=&#8221;off&#8221; featured_image=&#8221;off&#8221; text_color=&#8221;light&#8221; admin_label=&#8221;Fullwidth Post Title&#8221; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; title_text_align=&#8221;center&#8221; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_direction=&#8221;145deg&#8221; background_color_gradient_stops=&#8221;#361420 30%|#005973 100%&#8221; background_color_gradient_start=&#8221;#361420&#8243; background_color_gradient_start_position=&#8221;30%&#8221; background_color_gradient_end=&#8221;#005973&#8243; custom_padding=&#8221;34px||34px||false|false&#8221; custom_padding_tablet=&#8221;34px||34px||false|false&#8221; custom_padding_phone=&#8221;20px||20px||false|false&#8221; custom_padding_last_edited=&#8221;on|phone&#8221; title_font_size_tablet=&#8221;40px&#8221; title_font_size_phone=&#8221;30px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_fullwidth_post_title][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_3,1_3&#8243; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_3&#8243; admin_label=&#8221;Main Body&#8221; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;Last Updated On&#8221; module_class=&#8221;last_update_on&#8221; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;|700||on|||||&#8221; text_text_color=&#8221;rgba(0,0,0,0.5)&#8221; text_font_size=&#8221;12.5px&#8221; custom_margin=&#8221;30px||||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Updated On <style>\n    \/* Short Code Modules *\/\n    .insert_last_update_date.last_update_date{\n        background-color: #f9f9f9;\n        color: #444444;\n        font-size: 100%;\n        padding: 0.2rem 0.5rem;\n        border-radius: 1rem;\n    }\n<\/style>\n<span class=\"insert_last_update_date last_update_date\">Sep 19, 2024<\/span>\n\n<\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;rgba(114,114,114,0.95)&#8221; text_font_size=&#8221;14px&#8221; background_enable_color=&#8221;off&#8221; box_shadow_horizontal_last_edited=&#8221;off|desktop&#8221; global_colors_info=&#8221;{}&#8221; box_shadow_horizontal__hover_enabled=&#8221;off|desktop&#8221;]<\/p>\n<p>This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.<\/p>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;PDF &#038; Print&#8221; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; positioning=&#8221;absolute&#8221; position_origin_a=&#8221;top_right&#8221; vertical_offset=&#8221;20px&#8221; width=&#8221;100%&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div class=\"pdfprnt-buttons\"><a href=\"javascript: imageToPdf()\" class=\"pdfprnt-button pdfprnt-button-pdf\" target=\"_self\"><img decoding=\"async\" src=\"https:\/\/geneticspolicy.nccrcg.org\/wp-content\/uploads\/pdf-print-buttons\/pdf_button.png?134760547\" alt=\"image_pdf\" title=\"View PDF\" \/><span class=\"pdfprnt-button-title pdfprnt-button-pdf-title\">View as PDF<\/span><\/a><\/div>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Introduction<\/h2>\n<div>\n<p><span>Population screening is offering a screening test to everyone in a specific population, even if they don\u2019t have signs or symptoms of the condition. \u00a0One example of population screening is newborn screening. \u00a0As each child is born, they are offered screening for a variety of conditions that can develop in the newborn period.<\/span><\/p>\n<p>For further understanding of population screening, the following articles will provide more in-depth information. The Centers for Disease Control and Prevention (CDC) posted a discussion of the scientific and implementation challenges of population screening in this <span><a href=\"https:\/\/blogs.cdc.gov\/genomics\/2013\/02\/21\/how-can-we-use-genetic-testing\/\">blog post.<\/a><\/span><span> \u00a0A discussion of population screening for BRCA1 and BRCA2 across multiple countries and health systems is discussed in this <\/span><span><a href=\"https:\/\/www.mdpi.com\/2072-6694\/12\/7\/1929\/htm\">article.<\/a><\/span><\/p>\n<p>As exemplified in these discussions, population screening only makes sense for specific conditions. The risks and benefits of population screening help to explain the decision making process behind which conditions are chosen for population screening.<\/p>\n<p>As providers, evidence-based guidelines help us to screen our asymptomatic patients without family history for conditions such as colon cancer and cervical cancer. \u00a0Colonoscopy is one example of population screening that has risks and benefits, as with many invasive procedures. \u00a0Not every patient needs a colonoscopy, and if every provider ordered one for every patient, the costs to perform all these tests and the risk the patients would be exposed to would outweigh the benefit of the actual number of cases detected. Population screening makes sense for the right population at the right time, relying on clinicians to determine a patient\u2019s risk profile by asking about symptoms and obtaining an extensive family history. \u00a0Population screening is designed to benefit the greatest number of people by trying to capture as many people who might be affected by the condition, with the least amount of risk, all while balancing the cost.<\/p>\n<p>As the cost of genetic testing lowers, questions regarding population screening are arising. \u00a0For example, some have suggested that all adults should have genetic screening for cancer predisposition genes. \u00a0Others have suggested that this be done only in those already having testing for other genetic conditions.<\/p>\n<p>Any policy to offer population screening comes with benefits and limitations. \u00a0A discussion regarding these types of screening recommendations as it relates to secondary findings can be found in this <span><\/span>policy statement<span> by the American College of Medical Genetics and Genomics (ACMG).<\/span><\/p>\n<\/div>\n<h2>Legislation and Regulation<\/h2>\n<p>There are no laws or regulations that specifically apply to population screening (except in newborns).<\/p>\n<p>As newborn screening is a state-based program, each state determines which conditions are screened for, how the screen is paid for, and how follow-up and treatment is handled. For more information on newborn screening in your state, visit the Health Resources &amp; Services Administration (HRSA) Newborn Screening <a href=\"https:\/\/newbornscreening.hrsa.gov\/your-state\" target=\"_blank\" rel=\"noopener\">website<\/a> or <a href=\"https:\/\/www.babysfirsttest.org\/\" target=\"_blank\" rel=\"noopener\">Baby&#8217;s First Test<\/a>.<\/p>\n<p>Are you interested in learning what your state\u2019s government or the federal government are currently proposing for either legislation or regulation? Check out <a href=\"https:\/\/geneticspolicy.nccrcg.org\/legislative-policies\/\" target=\"_blank\" rel=\"noopener\">Legislative\/Tracking system<\/a> for up-to-date information and subscribe to our <a href=\"https:\/\/twitter.com\/geneticspolicy\" target=\"_blank\" rel=\"noopener\">Twitter<\/a> channel to get the latest updates in your pocket.<\/p>\n<h2>Policy Positions<\/h2>\n<div><span>Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on population screening. Explore these position statements below.\u00a0<\/span><\/div>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n    <span><\/span>\n    <style>\n        \/* Fix for empty P tag *\/\n        .wp-block-group__inner-container > p{\n            display: none;\n        }\n        .position-widget {\n            margin: -2rem 0 2rem;\n        }\n        .position-widget .header{\n            display: block;\n            background-color: #efefef;\n            color: #444444;\n            font-size: 0.8rem;\n            text-align: center;\n            border-radius: 5px 5px 0 0;\n        }\n        .position-widget .body{\n            padding: 0 0 1rem 0;\n            background-color: #efefef;\n            border-radius: 0 0 5px 5px;\n            box-shadow: 0px 0px 5px inset rgba(0,0,0, 0.2);\n        }\n        .position-widget .body > .scroller{\n            padding: 1rem 1rem 0 1rem;\n        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5px 5px;\n            border-radius: 20px;\n            font-size: 0.8rem;\n            color: #fff;\n        }\n        .position-widget .body .scroller > .wrapper div.item div.field.subject .value{\n            overflow: hidden;\n            white-space: nowrap;\n        }\n        .position-widget .body .scroller > .wrapper div.item div.field.subject .value span{\n            display: inline-block;\n            color: #000;\n        }\n        .position-widget .body .scroller > .wrapper .item  div.field{\n            margin-bottom: 1rem;\n        }\n        .position-widget .body .scroller > .wrapper .item  div.field:last-child{\n            margin-bottom: 0;\n        }\n        .position-widget .body .scroller > .wrapper  .item  div.field .label{\n            font-size: 0.7rem;\n            color: #444444;\n            text-transform: uppercase;\n            line-height: 1.2;\n        }\n        .position-widget .footer{\n            text-align: right;\n        } \n        .position-widget .footer a.export span{\n            font-size: 0.8rem;\n            font-weight: bold;\n        }\n    <\/style>\n    <div class=\"position-widget\">\n        <div class=\"header\">Position Statements by Organizations<\/div>\n        <div class=\"body\">\n            <div class=\"scroller\">\n                <div class=\"wrapper\">\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"The use of ACMG secondary findings recommendations for general population screening: a policy statement of the American College of Medical Genetics and Genomics (ACMG)\">The use of ACMG secondary findings recommendations for general population screening: a policy statement of the American College of Medical Genetics and Genomics (ACMG)<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.acmg.net\/PDFLibrary\/s41436-019-0502-5.pdf\" target=\"_blank\"  title=\"https:\/\/www.acmg.net\/PDFLibrary\/s41436-019-0502-5.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.acmg.net\/PDFLibrary\/s41436-019-0502-5.pdf<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #c9522a\" title=\"American College of Medical Genetics and Genomics (ACMG)\">American College of Medical Genetics and Genomics (ACMG)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Population Screening,Secondary Findings\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #8aabc4\">Population Screening<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #d1c18b\">Secondary Findings<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">July 1, 2019<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"ACMG SF v3.0 list for reporting of secondary findings in clinical exome and genome sequencing: a policy statement of the American College of Medical Genetics and Genomics (ACMG)\">ACMG SF v3.0 list for reporting of secondary findings in clinical exome and genome sequencing: a policy statement of the American College of Medical Genetics and Genomics (ACMG)<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.acmg.net\/PDFLibrary\/41436_2021_1172_OnlinePDF-1.pdf\" target=\"_blank\"  title=\"https:\/\/www.acmg.net\/PDFLibrary\/41436_2021_1172_OnlinePDF-1.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.acmg.net\/PDFLibrary\/41436_2021_1172_OnlinePDF-1.pdf<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #c9522a\" title=\"American College of Medical Genetics and Genomics (ACMG)\">American College of Medical Genetics and Genomics (ACMG)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Secondary Findings,Population Screening\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #d1c18b\">Secondary Findings<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #8aabc4\">Population Screening<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">February 22, 2021<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                <\/div>\n            <\/div>\n        <\/div>\n        <div class=\"footer\">\n            <a class=\"export\" href=\"\/exports\/Secondary+Findings%2CPopulation+Screening\/0\/\" title=\"Export list\"><i class=\"las la-arrow-circle-down\"><\/i> <span>Export<\/span><\/a>\n        <\/div>\n    <\/div>\n    <script>\n        window.addEventListener(\"load\", function(event){\n            jQuery( document ).ready(function($) {\n                \n            });\n        });\n    <\/script>\n    \n\n\n\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; admin_label=&#8221;Jump Links 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