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Genetic testing
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==Government regulation== ===In the United States=== With regard to genetic testing and information in general, legislation in the United States called the [[Genetic Information Nondiscrimination Act]] prohibits group health plans and health insurers from denying coverage to a healthy person or charging that person higher premiums based solely on a [[genetic predisposition]] to developing a disease in the future. The legislation also bars employers from using genetic information when making [[Recruitment|hiring]], [[Termination of employment|firing]], job placement, or [[Promotion (rank)|promotion]] decisions.<ref name="OMB support">[http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/SAPonHR493.pdf Statement of Administration policy], Executive Office of the President, Office of Management and Budget, 27 April 2007</ref> Although GINA protects against genetic discrimination, Section 210 of the law states that once the disease has manifested, employers can use the medical information and not be in violation of the law, even if the condition has a genetic basis.<ref name="pmid34221431">{{cite journal | vauthors = Chapman CR, Mehta KS, Parent B, Caplan AL | title = Genetic discrimination: emerging ethical challenges in the context of advancing technology | journal = Journal of Law and the Biosciences | volume = 7 | issue = 1 | pages = lsz016 | date = 2020 | pmid = 34221431 | pmc = 8249090 | doi = 10.1093/jlb/lsz016 }}</ref> The legislation, the first of its kind in the United States,<ref name="tedkennedy">{{cite web | url = http://kennedy.senate.gov/newsroom/press_release.cfm?id=4FCF8E86-4706-4E74-B451-36253C5A425D | title = Kennedy in support of genetic information nondiscrimination bill | date = 24 April 2008 | access-date = 28 May 2008 }}</ref> was passed by the [[United States Senate]] on April 24, 2008, on a vote of 95–0, and was signed into law by President [[George W. Bush]] on May 21, 2008.<ref name="Law">{{cite news | url=http://blog.wired.com/wiredscience/2008/05/the-genetic-inf.html | title=Genetic Discrimination by Insurers, Employers Becomes a Crime | vauthors = Keim B | work=Wired.com | date=May 21, 2008 | access-date=2008-05-28}}</ref><ref>{{cite web | url = http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=52305 | title = Administration News: President Bush Signs Genetic Nondiscrimination Legislation Into Law | work = Kaiser Daily Health Policy Report | publisher = [[Kaiser Family Foundation]] | date = 22 May 2008 | archive-url = https://web.archive.org/web/20090329011924/http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=52305 | archive-date = 2009-03-29 }}</ref> It went into effect on November 21, 2009. In June 2013 the US Supreme Court issued two rulings on human genetics. The Court struck down patents on human genes, opening up competition in the field of genetic testing.<ref>{{Citation |url= https://www.nytimes.com/2013/06/14/us/supreme-court-rules-human-genes-may-not-be-patented.html |title= Justices, 9-0, Bar Patenting Human Genes | vauthors = Liptak A |author-link= Adam Liptak |newspaper= [[New York Times]] |date=June 13, 2013 |access-date= June 30, 2013}}</ref> The Supreme Court also ruled that police were allowed to collect DNA from people arrested for serious offenses.<ref>{{Citation |title= Justices Allow DNA Collection After an Arrest | vauthors = Liptak A |author-link= Adam Liptak |newspaper= [[New York Times]] |date= June 3, 2013 |url= https://www.nytimes.com/2013/06/04/us/supreme-court-says-police-can-take-dna-samples.html |access-date= June 30, 2013}}</ref> ===In the European Union=== Effective as of 25 May 2018, companies that process genetic data must abide by the [[General Data Protection Regulation]] (GDPR).<ref>{{Cite web|url=https://gdpr-info.eu/art-9-gdpr/|title=Processing of special categories of personal data|website=gdpr-info.eu|access-date=23 October 2021}}</ref><ref name="EC_2018">{{Cite web|url=https://ec.europa.eu/commission/sites/beta-political/files/data-protection-overview-citizens_en.pdf|title=It's your Data - Take Control: Data Protection in the EU|date=2018|website=European Commission|access-date=1 May 2019}}</ref> The GDPR is a set of rules/regulations that helps an individual take control of their data that is collected, used, and stored digitally or in a structured filing system on paper, and restricts a company's use of personal data.<ref name="EC_2018" /> The regulation also applies to companies that offer products/services outside the EU.<ref name="EC_2018" /> === In Germany === Genetic testing in Germany is governed by the Genetic Diagnostics Act (GenDG),<ref>{{Cite web |date=2020-02-10 |title=German Genetic Diagnostics Act |url=https://www.medgen-mainz.de/en/for-physicians/request-forms/german-genetic-diagnostics-act/#:~:text=The%20German%20Genetic%20Diagnostics%20Act,of%20genetic%20samples%20and%20data. |access-date=2024-11-16 |website=www.medgen-mainz.de |language=en}}</ref> which mandates that health-related genetic tests can only be carried out under medical supervision to ensure the proper interpretation of results and informed decision-making. The law emphasizes genetic counseling and informed consent, protecting individuals from potential misuse or misunderstanding of their genetic data. === In France === The legal status of genetic testing in France is regulated under strict privacy and data protection laws, including the Bioethics Law.<ref>{{Cite web |last=Chivot |first=Eline |date=2019-07-24 |title=Tests génétiques : pourquoi la France doit assouplir sa loi bioéthique |url=https://www.contrepoints.org/2019/07/24/349722-tests-genetiques-pourquoi-la-france-doit-assouplir-sa-loi-bioethique |access-date=2024-11-16 |website=IREF Europe - Contrepoints |language=fr-FR}}</ref> Direct-to-consumer (DTC) genetic tests, especially those for health-related purposes, are prohibited unless conducted with medical oversight to ensure informed consent and appropriate counseling.<ref>{{Cite web |last=Boodman |first=Eric |date=2019-11-14 |title=In France, it's illegal for consumers to order a DNA spit kit. Activists are fighting over lifting the ban |url=https://www.statnews.com/2019/11/14/france-consumer-genetic-testing-ban/#:~:text=The%20French%20ban%20on%20direct,rules%20about%20commercial%20DNA%20analysis. |access-date=2024-11-16 |website=STAT |language=en-US}}</ref> This is due to concerns about the potential misuse of genetic data and privacy violations. While health-related genetic testing is allowed within a medical context, tests for non-medical purposes, such as ancestry or personal traits, also face legal restrictions, particularly regarding consumer access. ===In Russia=== Russian law<ref>Articles 10 and 11 of the Federal Law of July 27, 2006 No. 152-FZ "On Personal Data"</ref> provides that the processing of special categories of personal data relating to race, nationality, political views, religious or philosophical beliefs, health status, intimate life is allowed if it is necessary in connection with the implementation of international agreements of the Russian Federation on readmission and is carried out in accordance with the legislation of the Russian Federation on citizenship of the Russian Federation. Information characterizing the physiological and biological characteristics of a person, on the basis of which it is possible to establish his identity (biometric personal data), can be processed without the consent of the subject of personal data in connection with the implementation of international agreements of the Russian Federation on readmission, administration of justice and execution of judicial acts, compulsory state fingerprinting registration, as well as in cases stipulated by the legislation of the Russian Federation on defense, security, anti-terrorism, transport security, anti-corruption, operational investigative activities, public service, as well as in cases stipulated by the criminal-executive legislation of Russia, the legislation of Russia on the procedure for leaving the Russian Federation and entering the Russian Federation, citizenship of the Russian Federation and notaries. Within the framework of this program, it is also planned to include the peoples of neighboring countries, which are the main source of migration, into the genogeographic study on the basis of existing collections.<ref>{{Cite journal| vauthors = Mirolyubova S |title=Problems of Using DNA Test for Family Reunification and Repatriation |url= https://surguvest.elpub.ru/jour/article/view/571|journal=Surgut State University Journal|year=2021|volume=1 | issue = 31 |pages=91–100 |doi=10.34822/2312-3419-2021-1-91-100}}</ref> === In UAE === By the end of 2021, the UAE Genome Project will be in full swing, as part of the National Innovation Strategy, establishing strategic partnerships with top medical research centers, and making sustainable investments in healthcare services. The project aims to prevent genetic diseases through the use of genetic sciences and innovative modern techniques related to profiling and genetic sequencing, in order to identify the genetic footprint and prevent the most prevalent diseases in the country, such as obesity, diabetes, hypertension, cancer, and asthma. It aims to achieve personalized treatment for each patient based on genetic factors. Additionally, a study by Khalifa University has identified, for the first time, four genetic markers associated with type 2 diabetes among UAE citizens.<ref>{{Cite web |title= الإمارات تعد بإنجاز المشروع الصحي الاستراتيجي لأبنــاء الدولة 2021 | trans-title = The UAE promises to complete the strategic health project for the country’s people in 2021 | date = 4 December 2017 | language = Arabic |url=http://www.albayan.ae/across-the-uae/news-and-reports/2017-12-04-1.3120616 |archive-url=https://web.archive.org/web/20171204005915if_/http://www.albayan.ae/across-the-uae/news-and-reports/2017-12-04-1.3120616 |url-status=dead |archive-date=2017-12-04 | work = Albayan}}</ref> ===In Israel=== The Israeli [[Knesset]] passed the Genetic Information Law in 2000, becoming one of the first countries to establish a regulatory framework for the conducting of genetic testing and genetic counseling and for the handling and use identified genetic information. Under the law, genetic tests must be done in labs accredited by the [[Ministry of Health (Israel)|Ministry of Health]]; however, genetic tests may be conducted outside Israel. The law also forbids discrimination for employment or insurance purposes based on genetic test results. Finally, the law takes a strict approach to genetic testing on minors, which is permitted only for the purpose of finding a genetic match with someone ill for the sake of medical treatment, or to see whether the minor carries a gene related to an illness that can be prevented or postponed.<ref name="Zlotogora">{{cite journal | vauthors = Zlotogora J | title = Genetics and genomic medicine in Israel | journal = Molecular Genetics & Genomic Medicine | volume = 2 | issue = 2 | pages = 85–94 | date = March 2014 | pmid = 24689070 | pmc = 3960049 | doi = 10.1002/mgg3.73 }}</ref><ref>{{cite news | vauthors = Even D |title=A Different Kind of Inheritance |url=https://www.haaretz.com/2009-10-22/ty-article/a-different-kind-of-inheritance/0000017f-e6de-dc7e-adff-f6ff10f30000 |access-date=16 January 2024 |work=[[Haaretz]] |date=2009-10-22 |archive-url=https://archive.today/20240116050512/https://www.haaretz.com/2009-10-22/ty-article/a-different-kind-of-inheritance/0000017f-e6de-dc7e-adff-f6ff10f30000 |archive-date=2024-01-16}}</ref> Under the Genetic Information Law as of 2019, commercial DNA tests are not permitted to be sold directly to the public, but can be obtained with a court order, due to data privacy, reliability, and misinterpretation concerns.<ref>{{cite news | vauthors = Keyser Z |title=Want to fully understand your family genealogy? Not without a court order |url=https://www.jpost.com/israel-news/want-to-fully-understand-your-family-genealogy-not-without-a-court-order-585230 |access-date=16 January 2024 |work=[[Jerusalem Post]] |date=2019-03-30}}</ref>
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