Policy Issues in Genomics

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<div id="block-languageswitch"> </div> </header> <main id="main" role="main"> <a id="main-content" tabindex="-1"></a> <img src="/themes/custom/nhgri/assets/global/NHGRI_grey_teal.svg" class="logo-print-only" alt="NHGRI logo" /> <div class="region region-content"> <div data-drupal-messages-fallback class="hidden"></div><div id="block-nhgri-content"> <article data-history-node-id="18791" class="node node--type-folded-hero-template node--promoted node--view-mode-full nhgri_custom"> <div class="node__content"> <style> .component.folded-hero#c-0673ea18-f5bf-4eb8-ad84-bc17a3e5a7db { background: url("/sites/default/files/media/images/2019-03/1.3_Policy_Issues_in_Genomics-hero.jpg"); background-size: cover; background-position: right; } @media(max-width: 1023.999px){ .component.folded-hero#c-0673ea18-f5bf-4eb8-ad84-bc17a3e5a7db .container { height: 100%; background: linear-gradient(to bottom, rgba(0,0,0,0), rgba(0,0,0,0.5)); } } @media(min-width: 1024px){ .component.folded-hero#c-0673ea18-f5bf-4eb8-ad84-bc17a3e5a7db .container { height: 100%; background: -moz-linear-gradient(90deg, rgba(0,0,0,0.7) 0%, rgba(0,0,0,0) 100%); background: -webkit-linear-gradient(90deg, rgba(0,0,0,0.7) 0%, rgba(0,0,0,0) 100%); background: linear-gradient(90deg, rgba(0,0,0,0.7) 0%, rgba(0,0,0,0) 100%); } } /*@media(min-width: 640px){ .show-on-mobile {position:absolute; top: -500px} } @media(max-width: 639px){ .heading-container {v} }*/ </style> <style> @import url('/themes/custom/nhgri/css/style-content.css'); </style> <div class="component folded-hero dark " id="c-0673ea18-f5bf-4eb8-ad84-bc17a3e5a7db"> <div class="container"> <div class="interior"> <div class="grid-container"> <div class="grid-x"> <div class="cell large-7"> <div class="heading-container"> <span class="accent teal left"></span> <h1 class="h1 eyebrow" id="_followMouse" >Policy Issues in Genomics</h1> </div> </div> </div> </div> </div> </div> </div> <div class="component intro-text light white" id="c-33d63ac5-7f9c-4302-8350-c7831137dced"> <div class="interior"> <div class="grid-container"> <div class="grid-x"> <div class="cell wrapper"> <p>NHGRI is committed to driving the responsible use of genomics in society in order to advance knowledge and ensure that genomics benefits the health of all humans. To do this, we consider the ethical, legal, and social aspect of genomics research in our work, including these key issues.</p> </div> </div> </div> </div> </div> <style> @import url('/themes/custom/nhgri/css/style-content.css'); </style> <div class="component section-tiles light white" id="c-875d0770-7d6c-4ed6-80db-736ab11736d1"> <div class="interior"> <div class="grid-container"> <div class="grid-x align-center"> <div class="cell"> <div class="grid-x grid-margin-x align-center "> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-0 .tile-thumbnail:after { background-image: url(/sites/default/files/1.3.3.1_Coverage_and_Reimbursement_of_Genetic_Tests.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-0"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/1.3.3.1_Coverage_and_Reimbursement_of_Genetic_Tests.jpg" alt="Coverage and Reimbursement of Genetic Tests | NHGRI"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Coverage-Reimbursement-of-Genetic-Tests" target="_self" class="arrow royal-blue">Coverage and Reimbursement of Genetic Tests</a> <p>Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-1 .tile-thumbnail:after { background-image: url(/sites/default/files/1.3.3.2_isolated_person.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-1"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/1.3.3.2_isolated_person.jpg" alt="鈥婫enetic Discrimination | NHGRI"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Genetic-Discrimination" target="_self" class="arrow royal-blue">Genetic Discrimination</a> <p>In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-2 .tile-thumbnail:after { background-image: url(/sites/default/files/1.3.3.3_Zebrafish_DNA.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-2"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/1.3.3.3_Zebrafish_DNA.jpg" alt="Genome Editing | NHGRI"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/what-is-Genome-Editing" target="_self" class="arrow royal-blue">What is genome editing?</a> <p>Genome editing is a method that lets scientists change the DNA of many organisms, including plants, bacteria, and animals.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-3 .tile-thumbnail:after { background-image: url(/sites/default/files/1.3.3.4_doctor_patient.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-3"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/1.3.3.4_doctor_patient.jpg" alt="Health Disparities | NHGRI"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Genomics-Health-Disparities" target="_self" class="arrow royal-blue">Health Disparities</a> <p>NHGRI wants to ensure that all populations benefit from the advances of genomics research.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-4 .tile-thumbnail:after { background-image: url(/sites/default/files/1.3.3.5_Human_Population_ACTG.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-4"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/1.3.3.5_Human_Population_ACTG.jpg" alt="鈥婬uman Subjects Research | NHGRI"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Human-Subjects-Research-in-Genomics" target="_self" class="arrow royal-blue">Human Subjects Research</a> <p>Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-5 .tile-thumbnail:after { background-image: url(/sites/default/files/media/images/2022-01/patient-consent-dyn.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-5"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/media/images/2022-01/patient-consent-dyn.jpg" alt="Informed Consent"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Informed-Consent" target="_self" class="arrow royal-blue">Informed Consent</a> <p>Informed consent shows respect for personal autonomy and is an important ethical requirement in research.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-6 .tile-thumbnail:after { background-image: url(/sites/default/files/1.3.3.7_gavel_for_patents.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-6"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/1.3.3.7_gavel_for_patents.jpg" alt="鈥婭ntellectual Property in Genomics | NHGRI"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Intellectual-Property" target="_self" class="arrow royal-blue">Intellectual Property in Genomics</a> <p>In June 2013, the Supreme Court determined that DNA in its natural form cannot be patented.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-7 .tile-thumbnail:after { background-image: url(/sites/default/files/media/images/2021-05/investigative-genomics_dynamic.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-7"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/media/images/2021-05/investigative-genomics_dynamic.jpg" alt="DNA with magnifying glass"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Investigative-Genomics" target="_self" class="arrow royal-blue">Investigative Genomics</a> <p>Genetic information is used by law enforcement to investigate criminal acts and exonerate those who have been convicted of crimes they did not commit.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-8 .tile-thumbnail:after { background-image: url(/sites/default/files/media/images/2023-09/population-descriptors-dyn_1.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-8"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/media/images/2023-09/population-descriptors-dyn_1.jpg" alt="graphic showing people as part of a spectrum"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/population-descriptors-in-genomics" target="_self" class="arrow royal-blue">Use of Population Descriptors in Genomics</a> <p>Appropriate use of population descriptors in research is a critical scientific issue that is important for advancing genomic science and improving healthcare across human populations.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-9 .tile-thumbnail:after { background-image: url(/sites/default/files/1.3.3.8_Privacy_explanation.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-9"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/1.3.3.8_Privacy_explanation.jpg" alt="鈥婸rivacy in Genomics | NHGRI"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Privacy" target="_self" class="arrow royal-blue">Privacy in Genomics</a> <p>There are laws and policies that serve to protect the privacy of individuals' genomic information.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-10 .tile-thumbnail:after { background-image: url(/sites/default/files/1.3.3.9_pipette_genetic_test.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-10"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/1.3.3.9_pipette_genetic_test.jpg" alt="鈥婻egulation of Genetic Tests | NHGRI"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Regulation-of-Genetic-Tests" target="_self" class="arrow royal-blue">Regulation of Genetic Tests</a> <p>Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.</p> </div> </div> </div> <style> .component.section-tiles#c-875d0770-7d6c-4ed6-80db-736ab11736d1 #tile-11 .tile-thumbnail:after { background-image: url(/sites/default/files/1.3.3.10_Synthetic_Biology.jpg); } </style> <div class="cell small-12 medium-6 large-4 tile" id="tile-11"> <div class="tile-wrapper"> <div class="tile-thumbnail"> <img src="/sites/default/files/1.3.3.10_Synthetic_Biology.jpg" alt="Synthetic Biology | NHGRI"> </div> <div class="tile-context"> <a href="/about-genomics/policy-issues/Synthetic-Biology" target="_self" class="arrow royal-blue">Synthetic Biology</a> <p>Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.</p> </div> </div> </div> </div> </div> </div> </div> </div> </div> <style> .additional-resources#c-bafc2efa-cd20-482f-9ed7-a9e3b9219feb #thumbnail-0::after { background-image: url('/sites/default/files/media/images/2024-02/Legislative_Database_DYN.webp'); } .additional-resources#c-bafc2efa-cd20-482f-9ed7-a9e3b9219feb #thumbnail-1::after { background-image: 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