{"id":3105,"date":"2022-02-25T17:41:11","date_gmt":"2022-02-25T22:41:11","guid":{"rendered":"https:\/\/geneticspolicy.nccrcg.org\/?post_type=policy-area&#038;p=3105"},"modified":"2024-09-19T11:32:33","modified_gmt":"2024-09-19T15:32:33","slug":"genetic-privacy","status":"publish","type":"policy-area","link":"https:\/\/geneticspolicy.nccrcg.org\/policy-area\/genetic-privacy\/","title":{"rendered":"Genetic Privacy"},"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 Information on GPH should be used for historical reference only.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 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; 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 _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Introduction<\/h2>\n<p>Genetic privacy is the protection of genetic information from unauthorized disclosure to third parties, such as family members, employers, insurers, law enforcement, and the government. Genetic information can include DNA test results, biochemical tests, and diagnoses made from physical examination or family histories.<\/p>\n<p>On a federal level, there are two main statues that protect genetic privacy: the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). While these two acts will be summarized below, more information can be found on HIPPA on the U.S. Department of Health and Human Services (HHS) <a href=\"https:\/\/www.hhs.gov\/hipaa\/for-professionals\/privacy\/index.html#:~:text=The%20HIPAA%20Privacy%20Rule%20establishes,certain%20health%20care%20transactions%20electronically.\" target=\"_blank\" rel=\"noopener\">website<\/a>; and about GINA on the National Human Genome Research Institute (NHGRI) <a href=\"https:\/\/www.genome.gov\/about-genomics\/policy-issues\/Genetic-Discrimination\" target=\"_blank\" rel=\"noopener\">website<\/a>.<\/p>\n<p>HIPAA regulates disclosures of medical information in healthcare settings. HIPAA regulates how and when health providers can disclose your medical information. For example, if you have genetic testing and your daughter calls to get the results, HIPAA prevents this disclosure without your authorization. Likewise, if you are applying for life insurance and a life insurance company calls your doctor to get your medical records, HIPAA prevents this disclosure without your authorization. However, HIPAA does allow for some disclosures without the patient\u2019s authorization. For example, it allows the disclosure of information for the purpose of treatment, payment, or healthcare operations. Thus, if you are in a car accident and the emergency room calls your provider to find out what medications you are taking, this disclosure is allowed as it is for the purpose of treatment. Likewise, when your provider bills your insurance company, the insurance company can request records to determine payment.<\/p>\n<p>GINA is intended to prevent discrimination based on genetic information by health insurers and employers. Before GINA, it was legal for a health insurance company to charge a person more for health insurance, or to deny them health insurance, based on their genetic information. For example, a person who was perfectly healthy, but had a higher chance of developing cancer could be denied health insurance. After GINA was implemented, individuals were protected from discrimination based on genetic information by health insurers and employers.<\/p>\n<p>HIPAA and GINA do not apply in all situations. For example, neither apply to life, disability, or long-term care insurance companies. It is legal for a life insurance company to ask if an applicant has had genetic testing, then make coverage decisions based on that answer, or even require testing prior to coverage. GINA does not apply to companies with few employees, US military members who get care through Tricare, veterans who get care at the VA or through the Indian Health Service, or federal employees enrolled in the Federal Employee Health Benefits Plan.<\/p>\n<p>As scientists started researching human genetics, it became apparent that people also needed genetic privacy protections in medical research. Thus, regulations have been written to protect research subject\u2019s genetic information. For more information on genetic privacy in research, please visit the NHGRI\u2019s <a href=\"https:\/\/www.genome.gov\/about-genomics\/policy-issues\/Privacy\" target=\"_blank\" rel=\"noopener\">website<\/a>.<\/p>\n<h2>Legislation and Regulation<\/h2>\n<div>\n<p>The HIPAA Privacy Rule established national standards to protect individuals&#8217; medical records and other personal health information and applies to health plans, health care clearinghouses, and those health care providers that conduct certain health care transactions electronically. More information on HIPPA can be found on the <a href=\"https:\/\/www.hhs.gov\/hipaa\/for-professionals\/privacy\/index.html#:~:text=The%20HIPAA%20Privacy%20Rule%20establishes,certain%20health%20care%20transactions%20electronically.\" target=\"_blank\" rel=\"noopener\">HHS website<\/a>.<\/p>\n<p>Although more focused on genetic discrimination than genetic privacy, the federal government attempted to address concerns through the passage of the Genetic Information Nondiscrimination Act of 2008 (GINA). More information on this act can be found on the National Human Genome Research Institute (NHGRI) <a href=\"https:\/\/www.genome.gov\/about-genomics\/policy-issues\/Genetic-Discrimination\" target=\"_blank\" rel=\"noopener\">website<\/a> which provides an overview of GINA and describes what protections GINA does and does not offer. Additional protections can be found in other legislation, such as the Affordable Care Act and the Americans with Disabilities Act. A summary of those protections can be found elsewhere on the NHGRI <a href=\"https:\/\/www.genome.gov\/about-genomics\/policy-issues\/Genetic-Discrimination#otherlaws\" target=\"_blank\" rel=\"noopener\">website<\/a>.<\/p>\n<\/div>\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<p>&nbsp;<\/p>\n<h2>Policy Positions<\/h2>\n<div>\n<p><span>Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on genetic privacy. Explore these position statements below.<\/span><\/p>\n<p>&nbsp;<\/p>\n<\/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            overflow-y: auto;\n            max-height: 500px;\n        }\n        .position-widget .body .scroller > .wrapper{\n            display: flex;\n            align-items: center;\n            justify-content: left;\n            flex-flow: row wrap;\n            align-content: flex-start;\n        }\n        .position-widget .body .scroller > .wrapper > .item{\n            flex: 33.3%;\n            max-width: 33.3%;\n            padding: 0 1rem 1rem 0;\n            box-sizing: border-box;\n        }\n        .position-widget .body .scroller > .wrapper > .item .item_wrapper{\n            border: 1px solid #fff;\n            background-color: #fff;\n            padding: 1rem;\n            border-radius: 5px;\n            box-shadow: 0 0 5px rgba(0,0,0,0.2);\n        }\n        .position-widget .body .scroller > .wrapper > .item:hover .item_wrapper{\n            border: 1px solid #999;\n        }\n        .position-widget .body .scroller > .wrapper div.item h6{\n         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    padding: 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=\"Privacy and Confidentiality of Genetic Information:  the Role of the Nurse\">Privacy and Confidentiality of Genetic Information:  the Role of the Nurse<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.isong.org\/resources\/Documents\/ISONG%20Position%20Statement_Privacy%20and%20Confidentiality%20of%20Genetic%20Information%20approved%20May%201%202018.pdf\" target=\"_blank\"  title=\"https:\/\/www.isong.org\/resources\/Documents\/ISONG%20Position%20Statement_Privacy%20and%20Confidentiality%20of%20Genetic%20Information%20approved%20May%201%202018.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.isong.org\/resources\/Documents\/ISONG%20Position%20Statement_Privacy%20and%20Confidentiality%20of%20Genetic%20Information%20approved%20May%201%202018.pdf<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #8036db\" title=\"International Society of Nurses in Genetics (ISONG)\">International Society of Nurses in Genetics (ISONG)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Genetic Privacy\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">April 5, 2010<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Comments on the Implementation of GINA\">Comments on the Implementation of GINA<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.ashg.org\/wp-content\/uploads\/2008\/11\/Comments-20081812-response-to-request-in-GINA.pdf\" target=\"_blank\"  title=\"https:\/\/www.ashg.org\/wp-content\/uploads\/2008\/11\/Comments-20081812-response-to-request-in-GINA.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.ashg.org\/wp-content\/uploads\/2008\/11\/Comments-20081812-response-to-request-in-GINA.pdf<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #41a819\" title=\"American Society of Human Genetics (ASHG)\">American Society of Human Genetics (ASHG)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Discrimination,Genetic Testing,Genetic Privacy\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Discrimination<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c192cd\">Genetic Testing<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">December 18, 2008<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Nondiscrimination\">Nondiscrimination<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.nsgc.org\/p\/bl\/et\/blogaid=32\" target=\"_blank\"  title=\"https:\/\/www.nsgc.org\/p\/bl\/et\/blogaid=32\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.nsgc.org\/p\/bl\/et\/blogaid=32<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #d334c3\" title=\"National Society of Genetic Counselors (NSGC)\">National Society of Genetic Counselors (NSGC)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Discrimination,Genetic Privacy\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Discrimination<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">June 1, 2011<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Supporting Research Participant Privacy\">Supporting Research Participant Privacy<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.ashg.org\/publications-news\/press-releases\/201612-century-cures-act\/\" target=\"_blank\"  title=\"https:\/\/www.ashg.org\/publications-news\/press-releases\/201612-century-cures-act\/\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.ashg.org\/publications-news\/press-releases\/201612-century-cures-act\/<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #41a819\" title=\"American Society of Human Genetics (ASHG)\">American Society of Human Genetics (ASHG)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Genetic Privacy,Genetic Research,Legal\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #e4ba95\">Genetic Research<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #8ac4ad\">Legal<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">June 30, 2015<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Joint Letter to Congress in Support of Genetic Information Non-discrimination Act (GINA)\">Joint Letter to Congress in Support of Genetic Information Non-discrimination Act (GINA)<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/medialib.aafp.org\/dam\/AAFP\/documents\/advocacy\/prevention\/strategy\/LT-Con-GINA-042115.pdf\" target=\"_blank\"  title=\"https:\/\/medialib.aafp.org\/dam\/AAFP\/documents\/advocacy\/prevention\/strategy\/LT-Con-GINA-042115.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/medialib.aafp.org\/dam\/AAFP\/documents\/advocacy\/prevention\/strategy\/LT-Con-GINA-042115.pdf<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #87144d\" title=\"American Academy of Family Physicians (AAFP)\">American Academy of Family Physicians (AAFP)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Genetic Privacy,Legal,Discrimination\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #8ac4ad\">Legal<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Discrimination<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">April 21, 2015<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Clinical Data Sharing\">Clinical Data Sharing<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.nsgc.org\/Policy-Research-and-Publications\/Position-Statements\/Position-Statements\/Post\/clinical-data-sharing\" target=\"_blank\"  title=\"https:\/\/www.nsgc.org\/Policy-Research-and-Publications\/Position-Statements\/Position-Statements\/Post\/clinical-data-sharing\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.nsgc.org\/Policy-Research-and-Publications\/Position-Statements\/Position-Statements\/Post\/clinical-data-sharing<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #d334c3\" title=\"National Society of Genetic Counselors (NSGC)\">National Society of Genetic Counselors (NSGC)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Genetic Research,Genetic Privacy\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #e4ba95\">Genetic Research<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">November 25, 2020<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Response to the NIH draft Genomic Data Sharing (GDS) policy\">Response to the NIH draft Genomic Data Sharing (GDS) policy<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/geneticalliance.org\/pdf\/policy\/Sign-on-to-NIH-Response-Genomic-Data-Sharing.pdf\" target=\"_blank\"  title=\"https:\/\/geneticalliance.org\/pdf\/policy\/Sign-on-to-NIH-Response-Genomic-Data-Sharing.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/geneticalliance.org\/pdf\/policy\/Sign-on-to-NIH-Response-Genomic-Data-Sharing.pdf<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #2241a5\" title=\"Genetic Alliance\">Genetic Alliance<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Genetic Privacy,Genetic Research\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #e4ba95\">Genetic Research<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">November 20, 2013<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Sign-on letter to the Response to the NIH Draft Genomic Data Sharing (GDS) Policy\">Sign-on letter to the Response to the NIH Draft Genomic Data Sharing (GDS) Policy<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/geneticalliance.org\/pdf\/policy\/Sign-on-to-NIH-Response-Genomic-Data-Sharing.pdf\" target=\"_blank\"  title=\"https:\/\/geneticalliance.org\/pdf\/policy\/Sign-on-to-NIH-Response-Genomic-Data-Sharing.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/geneticalliance.org\/pdf\/policy\/Sign-on-to-NIH-Response-Genomic-Data-Sharing.pdf<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #2241a5\" title=\"Genetic Alliance\">Genetic Alliance<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Genetic Privacy,Genetic Research\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #e4ba95\">Genetic Research<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">November 20, 2013<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Comments\ton\tProposed\tRule,\tAmendments\tto\tregulations\tunder\tthe\tGenetic\tInformation\tNondiscrimination\tAct\tof\t2008,\tRIN\t3046-AB02\">Comments\ton\tProposed\tRule,\tAmendments\tto\tregulations\tunder\tthe\tGenetic\tInformation\tNondiscrimination\tAct\tof\t2008,\tRIN\t3046-AB02<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/geneticalliance.org\/pdf\/policy\/01282016-Genetic_Alliance_GINA_NPRM_Comments.pdf\" target=\"_blank\"  title=\"https:\/\/geneticalliance.org\/pdf\/policy\/01282016-Genetic_Alliance_GINA_NPRM_Comments.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/geneticalliance.org\/pdf\/policy\/01282016-Genetic_Alliance_GINA_NPRM_Comments.pdf<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #2241a5\" title=\"Genetic Alliance\">Genetic Alliance<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Genetic Privacy,Workplace,Legal\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Workplace<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #8ac4ad\">Legal<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">January 28, 2016<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Blood Spot Storage and Use\">Blood Spot Storage and Use<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.nsgc.org\/Policy-Research-and-Publications\/Position-Statements\/Position-Statements\/Post\/blood-spot-storage-and-use\" target=\"_blank\"  title=\"https:\/\/www.nsgc.org\/Policy-Research-and-Publications\/Position-Statements\/Position-Statements\/Post\/blood-spot-storage-and-use\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.nsgc.org\/Policy-Research-and-Publications\/Position-Statements\/Position-Statements\/Post\/blood-spot-storage-and-use<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #d334c3\" title=\"National Society of Genetic Counselors (NSGC)\">National Society of Genetic Counselors (NSGC)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Newborn Screening,Genetic Privacy\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #8ac4ad\">Newborn Screening<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">November 15, 2022<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Workplace Wellness Programs\">Workplace Wellness Programs<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.nsgc.org\/POLICY\/Position-Statements\/Position-Statements\/Post\/workplace-wellness-programs\" target=\"_blank\"  title=\"https:\/\/www.nsgc.org\/POLICY\/Position-Statements\/Position-Statements\/Post\/workplace-wellness-programs\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.nsgc.org\/POLICY\/Position-Statements\/Position-Statements\/Post\/workplace-wellness-programs<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #d334c3\" title=\"National Society of Genetic Counselors (NSGC)\">National Society of Genetic Counselors (NSGC)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Discrimination,Genetic Privacy\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Discrimination<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">September 13, 2017<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Protecting Genetic Privacy in Law Enforcement\">Protecting Genetic Privacy in Law Enforcement<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.ashg.org\/wp-content\/uploads\/2017\/03\/Statement-20170203-Collection-and-use-of-genetic-information-Law-Enforcement.pdf\" target=\"_blank\"  title=\"https:\/\/www.ashg.org\/wp-content\/uploads\/2017\/03\/Statement-20170203-Collection-and-use-of-genetic-information-Law-Enforcement.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.ashg.org\/wp-content\/uploads\/2017\/03\/Statement-20170203-Collection-and-use-of-genetic-information-Law-Enforcement.pdf<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #41a819\" title=\"American Society of Human Genetics (ASHG)\">American Society of Human Genetics (ASHG)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Genetic Privacy,Legal\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #8ac4ad\">Legal<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">March 2, 2017<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Prohibiting Genetic Discrimination\">Prohibiting Genetic Discrimination<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.ashg.org\/advocacy\/statement-archive\/2019-genetic-discrimination\/\" target=\"_blank\"  title=\"https:\/\/www.ashg.org\/advocacy\/statement-archive\/2019-genetic-discrimination\/\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.ashg.org\/advocacy\/statement-archive\/2019-genetic-discrimination\/<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #41a819\" title=\"American Society of Human Genetics (ASHG)\">American Society of Human Genetics (ASHG)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Discrimination,Genetic Privacy\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Discrimination<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">January 2, 2019<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Advancing Research and Privacy Protections\">Advancing Research and Privacy Protections<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.ashg.org\/advocacy\/statement-archive\/advancing-research-privacy-protections\/\" target=\"_blank\"  title=\"https:\/\/www.ashg.org\/advocacy\/statement-archive\/advancing-research-privacy-protections\/\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.ashg.org\/advocacy\/statement-archive\/advancing-research-privacy-protections\/<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #41a819\" title=\"American Society of Human Genetics (ASHG)\">American Society of Human Genetics (ASHG)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Genetic Privacy,Genetic Research\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #e4ba95\">Genetic Research<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">September 5, 2019<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"At-Home Genetic Testing Position Statement\">At-Home Genetic Testing Position Statement<\/h6>\n\n                                <div class=\"field link\">\n                                    <div class=\"label\">Link<\/div>\n                                    <div class=\"value\"><a href=\"https:\/\/www.nsgc.org\/Policy-Research-and-Publications\/Position-Statements\/Position-Statements\/Post\/at-home-genetic-testing-position-statement\" target=\"_blank\"  title=\"https:\/\/www.nsgc.org\/Policy-Research-and-Publications\/Position-Statements\/Position-Statements\/Post\/at-home-genetic-testing-position-statement\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.nsgc.org\/Policy-Research-and-Publications\/Position-Statements\/Position-Statements\/Post\/at-home-genetic-testing-position-statement<\/a><\/div>\n                                <\/div>\n                                <div class=\"field organization\">\n                                    <div class=\"label\">Organization<\/div>\n                                    <div class=\"value\" style=\"background-color: #d334c3\" title=\"National Society of Genetic Counselors (NSGC)\">National Society of Genetic Counselors (NSGC)<\/div>\n                                <\/div>\n                                <div class=\"field subject\">\n                                    <div class=\"label\">Subject<\/div>\n                                    <div class=\"value\" title=\"Direct-to-Consumer Testing,Genetic Privacy\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #ab95d4\">Direct-to-Consumer Testing<\/span>\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">June 24, 2023<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                        <div class=\"item\"> \n                            <div class=\"item_wrapper\">\n                                <h6 title=\"Stewardship of patient genomic data: A policy statement of the American College of Medical Genetics and Genomics (ACMG)\">Stewardship of patient genomic data: 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\/Stewardship_of_genomic_data.pdf\" target=\"_blank\"  title=\"https:\/\/www.acmg.net\/PDFLibrary\/Stewardship_of_genomic_data.pdf\" aria-label=\"Hyperlink for this policy position\">https:\/\/www.acmg.net\/PDFLibrary\/Stewardship_of_genomic_data.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=\"Genetic Privacy\">\n                                                                                <span class=\"subject_entry\" style=\"background-color: #c2c48b\">Genetic Privacy<\/span>\n                                                                            <\/div>\n                                <\/div>\n                                <div class=\"field date\">\n                                    <div class=\"label\">Date<\/div>\n                                    <div class=\"value\">October 29, 2021<\/div>\n                                <\/div>\n                            <\/div>\n                        <\/div>\n                                <\/div>\n            <\/div>\n        <\/div>\n        <div class=\"footer\">\n            <a class=\"export\" href=\"\/exports\/Genetic+Privacy\/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 Sidebar&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_sidebar area=&#8221;sidebar-1&#8243; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;34px|||||&#8221; border_style_all=&#8221;none&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_sidebar][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"author":3,"featured_media":0,"menu_order":0,"template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<!-- wp:divi\/placeholder 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