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<article article-type="research-article" dtd-version="1.3" xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xml:lang="ru"><front><journal-meta><journal-id journal-id-type="publisher-id">lexgen</journal-id><journal-title-group><journal-title xml:lang="ru">Lex Genetica</journal-title><trans-title-group xml:lang="en"><trans-title>Lex Genetica</trans-title></trans-title-group></journal-title-group><issn pub-type="ppub">3034-1639</issn><issn pub-type="epub">3034-1647</issn><publisher><publisher-name>МГЮА</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="doi">10.17803/lexgen-2022-1-1-56-62</article-id><article-id custom-type="elpub" pub-id-type="custom">lexgen-6</article-id><article-categories><subj-group subj-group-type="heading"><subject>Research Article</subject></subj-group><subj-group subj-group-type="section-heading" xml:lang="ru"><subject>Статьи</subject></subj-group></article-categories><title-group><article-title></article-title><trans-title-group xml:lang="en"><trans-title>Genetic Information in the Light of Genetic Discrimination: the Experience of Foreign States</trans-title></trans-title-group></title-group><contrib-group><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="western" xml:lang="en"><surname>Ponomareva</surname><given-names>D. V.</given-names></name></name-alternatives><bio xml:lang="en"><p>Associate Professor of the Department of Legal Practice</p></bio><email xlink:type="simple">ponomard@yandex.ru</email><xref ref-type="aff" rid="aff-1"/></contrib></contrib-group><aff xml:lang="en" id="aff-1"><institution>Kutafin Moscow State Law University (MSAL)</institution><country>Russian Federation</country></aff><pub-date pub-type="collection"><year>2022</year></pub-date><pub-date pub-type="epub"><day>26</day><month>12</month><year>2022</year></pub-date><volume>1</volume><issue>1</issue><fpage>56</fpage><lpage>62</lpage><permissions><copyright-statement>Copyright &amp;#x00A9; Ponomareva D.V., 2022</copyright-statement><copyright-year>2022</copyright-year><copyright-holder xml:lang="ru">Ponomareva D.V.</copyright-holder><copyright-holder xml:lang="en">Ponomareva D.V.</copyright-holder><license xml:lang="ru" license-type="creative-commons-attribution" xlink:href="https://creativecommons.org/licenses/by/4.0/" xlink:type="simple"><license-p>Данная работа распространяется под лицензией Creative Commons Attribution 4.0.</license-p></license><license xml:lang="en" license-type="creative-commons-attribution" xlink:href="https://creativecommons.org/licenses/by/4.0/" xlink:type="simple"><license-p>This work is licensed under a Creative Commons Attribution 4.0 License.</license-p></license></permissions><self-uri xlink:href="https://lexgen.msal.ru/jour/article/view/6">https://lexgen.msal.ru/jour/article/view/6</self-uri><trans-abstract xml:lang="en"><p> Background. Genetic information is often used for purposes of discrimination. For example, the results of genetic testing can demonstrate a high risk of developing a disease in an apparently healthy person, which will require expensive medical care. Such information may affect the decision on the employment of a candidate for a job or the conditions for concluding an insurance contract with him/her. Objective. The article discusses major issues of legal regulation of public relations arising from protection against discrimination based on genetic status in the legislation and law enforcement practice of a number of foreign countries (Australia, Canada, the USA).Design. 20 studies written in English were retrieved from Scopus and Web of Science databases.Results. The research methodology is based on dialectical, logical, predictive methods, system analysis, content analysis, as well as private scientific methods (statistical, technical legal, comparative legal methods). The article provides an overview of the international legal framework for the regulation of public relations arising from countering discrimination based on genetic status, as well as key acts of leading foreign jurisdictions and law enforcement practice.Conclusion. In conclusion, the author reflects on the advisability of implementing relevant foreign experience into the Russian legal system.</p></trans-abstract><kwd-group xml:lang="en"><kwd>discrimination</kwd><kwd>genetic information</kwd><kwd>legal regulation</kwd><kwd>protection of rights</kwd><kwd>indigenous peoples</kwd><kwd>informed consent</kwd></kwd-group><funding-group><funding-statement xml:lang="en">This article is based on the results obtained within the framework of the State assignment of the Ministry of Education and Science of Russia 730000Ф.99.1.БВ16АА02001 (‘Scientific and methodological support’, Kutafin Moscow State Law University); the Russian Foundation for Basic Research grants 18-29-14078 MK and 18-29-14054 MK.</funding-statement></funding-group></article-meta></front><back><ref-list><title>References</title><ref id="cit1"><label>1</label><citation-alternatives><mixed-citation xml:lang="ru">Adams, C., Donnelly, C. &amp; Macdonald, A. (2015). The impact of known breast cancer polygenes on critical illness insurance. Scandinavian Actuarial Journal, 2015(2), 141–171. https://doi.org/10.1080/03461238.2013.794520</mixed-citation><mixed-citation xml:lang="en">Adams, C., Donnelly, C. &amp; Macdonald, A. (2015). The impact of known breast cancer polygenes on critical illness insurance. Scandinavian Actuarial Journal, 2015(2), 141–171. https://doi.org/10.1080/03461238.2013.794520</mixed-citation></citation-alternatives></ref><ref id="cit2"><label>2</label><citation-alternatives><mixed-citation xml:lang="ru">Chapman, C. R., Mehta, K. S., Parent, B. &amp; Caplan, A. L. (2020). Genetic discrimination: Emerging ethical challenges in the context of advancing technology. Journal of Law and the Biosciences, 7(1). https://doi.org/10.1093/jlb/lsz016</mixed-citation><mixed-citation xml:lang="en">Chapman, C. R., Mehta, K. S., Parent, B. &amp; Caplan, A. L. (2020). Genetic discrimination: Emerging ethical challenges in the context of advancing technology. Journal of Law and the Biosciences, 7(1). https://doi.org/10.1093/jlb/lsz016</mixed-citation></citation-alternatives></ref><ref id="cit3"><label>3</label><citation-alternatives><mixed-citation xml:lang="ru">Dupras, C., Song, L., Saulnier, K. M. &amp; Joly, Y. (2018). Epigenetic discrimination: emerging applications of epigenetics pointing to the limitations of policies against genetic discrimination. Frontiers in Genetics, 9, 202, 1–6. https://doi.org/10.3389/fgene.2018.00202</mixed-citation><mixed-citation xml:lang="en">Dupras, C., Song, L., Saulnier, K. M. &amp; Joly, Y. (2018). Epigenetic discrimination: emerging applications of epigenetics pointing to the limitations of policies against genetic discrimination. Frontiers in Genetics, 9, 202, 1–6. https://doi.org/10.3389/fgene.2018.00202</mixed-citation></citation-alternatives></ref><ref id="cit4"><label>4</label><citation-alternatives><mixed-citation xml:lang="ru">Feldman, E. A. (2012). The Genetic Information Nondiscrimination Act (GINA): public policy and medical practice in the age of personalized medicine. Journal of General Internal Medicine, 27(6), 743–746. https://doi.org/10.1007/s11606-012-1988-6</mixed-citation><mixed-citation xml:lang="en">Feldman, E. A. (2012). The Genetic Information Nondiscrimination Act (GINA): public policy and medical practice in the age of personalized medicine. Journal of General Internal Medicine, 27(6), 743–746. https://doi.org/10.1007/s11606-012-1988-6</mixed-citation></citation-alternatives></ref><ref id="cit5"><label>5</label><citation-alternatives><mixed-citation xml:lang="ru">Flynn, S., Cusack, G. &amp; Wallen, G. R. (2019, February). Integrating genomics into oncology practice. Seminars in Oncology Nursing, 35(1), 116–130. https://doi.org/10.1016/j.soncn.2018.12.005</mixed-citation><mixed-citation xml:lang="en">Flynn, S., Cusack, G. &amp; Wallen, G. R. (2019, February). Integrating genomics into oncology practice. Seminars in Oncology Nursing, 35(1), 116–130. https://doi.org/10.1016/j.soncn.2018.12.005</mixed-citation></citation-alternatives></ref><ref id="cit6"><label>6</label><citation-alternatives><mixed-citation xml:lang="ru">Gadzhiev, K. S. &amp; Gusov, K. N. (2017). Discrimination. Bol'shaya Rossiiskaya Ehntsiklopediya [Big Russian Encyclopedia]. Available at: https://bigenc.ru/law/text/1958348. (Accessed 5.05.2021). (In Russ.).</mixed-citation><mixed-citation xml:lang="en">Gadzhiev, K. S. &amp; Gusov, K. N. (2017). Discrimination. Bol'shaya Rossiiskaya Ehntsiklopediya [Big Russian Encyclopedia]. Available at: https://bigenc.ru/law/text/1958348. (Accessed 5.05.2021). (In Russ.).</mixed-citation></citation-alternatives></ref><ref id="cit7"><label>7</label><citation-alternatives><mixed-citation xml:lang="ru">Gammon, A. &amp; Neklason, D. W. (2015). Confidentiality &amp; the risk of genetic discrimination: What surgeons need to know. Surgical Oncology Clinics of North America, 24(4), 667. https://doi.org/10.1016/j.soc.2015.06.004</mixed-citation><mixed-citation xml:lang="en">Gammon, A. &amp; Neklason, D. W. (2015). Confidentiality &amp; the risk of genetic discrimination: What surgeons need to know. Surgical Oncology Clinics of North America, 24(4), 667. https://doi.org/10.1016/j.soc.2015.06.004</mixed-citation></citation-alternatives></ref><ref id="cit8"><label>8</label><citation-alternatives><mixed-citation xml:lang="ru">Gerards, J. H., Heringa, A. W. &amp; Janssen, H. L. (2005). Genetic discrimination and genetic privacy in a comparative perspective. Vol. 51. Intersentia nv.</mixed-citation><mixed-citation xml:lang="en">Gerards, J. H., Heringa, A. W. &amp; Janssen, H. L. (2005). Genetic discrimination and genetic privacy in a comparative perspective. Vol. 51. Intersentia nv.</mixed-citation></citation-alternatives></ref><ref id="cit9"><label>9</label><citation-alternatives><mixed-citation xml:lang="ru">Hao, M., Macdonald, A. S., Tapadar, P. &amp; Thomas, R. G. (2016). Insurance loss coverage under restricted risk classification: the case of iso-elastic demand. ASTIN Bulletin: The Journal of the IAA, 46(2), 265–291. https://doi.org/10.1017/asb.2016.6</mixed-citation><mixed-citation xml:lang="en">Hao, M., Macdonald, A. S., Tapadar, P. &amp; Thomas, R. G. (2016). Insurance loss coverage under restricted risk classification: the case of iso-elastic demand. ASTIN Bulletin: The Journal of the IAA, 46(2), 265–291. https://doi.org/10.1017/asb.2016.6</mixed-citation></citation-alternatives></ref><ref id="cit10"><label>10</label><citation-alternatives><mixed-citation xml:lang="ru">Keogh, L. A. &amp; Otlowski, M. F. (2013). Life insurance and genetic test results: a mutation carrier's fight to achieve full cover. Medical Journal of Australia, 199(5), 363–366. https://doi.org/10.5694/mja13.10202</mixed-citation><mixed-citation xml:lang="en">Keogh, L. A. &amp; Otlowski, M. F. (2013). Life insurance and genetic test results: a mutation carrier's fight to achieve full cover. Medical Journal of Australia, 199(5), 363–366. https://doi.org/10.5694/mja13.10202</mixed-citation></citation-alternatives></ref><ref id="cit11"><label>11</label><citation-alternatives><mixed-citation xml:lang="ru">Lemke, T. (2005). Beyond genetic discrimination. Problems and perspectives of a contested notion. Genomics, Society and Policy, 1(3), 1–19. https://doi.org/10.1186/1746-5354-1-3-22</mixed-citation><mixed-citation xml:lang="en">Lemke, T. (2005). Beyond genetic discrimination. Problems and perspectives of a contested notion. Genomics, Society and Policy, 1(3), 1–19. https://doi.org/10.1186/1746-5354-1-3-22</mixed-citation></citation-alternatives></ref><ref id="cit12"><label>12</label><citation-alternatives><mixed-citation xml:lang="ru">Motoc, I. (2009). The international law of genetic discrimination: the power of ‘never again’. Oxford University Press.</mixed-citation><mixed-citation xml:lang="en">Motoc, I. (2009). The international law of genetic discrimination: the power of ‘never again’. Oxford University Press.</mixed-citation></citation-alternatives></ref><ref id="cit13"><label>13</label><citation-alternatives><mixed-citation xml:lang="ru">Otlowski, M., Taylor, S. &amp; Bombard, Y. (2012). Genetic discrimination: international perspectives. Annual Review of Genomics and Human Genetics, 13, 433–454. https://doi.org/10.1146/annurev-genom-090711-163800</mixed-citation><mixed-citation xml:lang="en">Otlowski, M., Taylor, S. &amp; Bombard, Y. (2012). Genetic discrimination: international perspectives. Annual Review of Genomics and Human Genetics, 13, 433–454. https://doi.org/10.1146/annurev-genom-090711-163800</mixed-citation></citation-alternatives></ref><ref id="cit14"><label>14</label><citation-alternatives><mixed-citation xml:lang="ru">Rothstein, M. A. (2018). GINA at ten and the future of genetic nondiscrimination law. Hastings Center Report, 48(3), 5–7. https://doi.org/10.1002/hast.847</mixed-citation><mixed-citation xml:lang="en">Rothstein, M. A. (2018). GINA at ten and the future of genetic nondiscrimination law. Hastings Center Report, 48(3), 5–7. https://doi.org/10.1002/hast.847</mixed-citation></citation-alternatives></ref><ref id="cit15"><label>15</label><citation-alternatives><mixed-citation xml:lang="ru">Slaughter, L. M. (2008). The Genetic Information Nondiscrimination Act: why your personal genetics are still vulnerable to discrimination. Surgical Clinics of North America, 88(4), 723–738. https://doi.org/10.1016/j.suc.2008.04.004</mixed-citation><mixed-citation xml:lang="en">Slaughter, L. M. (2008). The Genetic Information Nondiscrimination Act: why your personal genetics are still vulnerable to discrimination. Surgical Clinics of North America, 88(4), 723–738. https://doi.org/10.1016/j.suc.2008.04.004</mixed-citation></citation-alternatives></ref><ref id="cit16"><label>16</label><citation-alternatives><mixed-citation xml:lang="ru">Sorokina E. M. &amp; Ponomareva, D. V. (2020). Indigenous Peoples’ Rights and Genomic Research in the United States: The Havasupai Case. International Legal Courier, (3–4), 40–45. (In Russ.).</mixed-citation><mixed-citation xml:lang="en">Sorokina E. M. &amp; Ponomareva, D. V. (2020). Indigenous Peoples’ Rights and Genomic Research in the United States: The Havasupai Case. International Legal Courier, (3–4), 40–45. (In Russ.).</mixed-citation></citation-alternatives></ref><ref id="cit17"><label>17</label><citation-alternatives><mixed-citation xml:lang="ru">Steck, M. B. &amp; Hassen, E. (2019). Genetic nondiscrimination laws: What oncology nurses need to know. Seminars in Oncology Nursing, 35(1), 107–115. https://doi.org/10.1016/j.soncn.2018.12.004</mixed-citation><mixed-citation xml:lang="en">Steck, M. B. &amp; Hassen, E. (2019). Genetic nondiscrimination laws: What oncology nurses need to know. Seminars in Oncology Nursing, 35(1), 107–115. https://doi.org/10.1016/j.soncn.2018.12.004</mixed-citation></citation-alternatives></ref><ref id="cit18"><label>18</label><citation-alternatives><mixed-citation xml:lang="ru">Taylor, S., Treloar, S., Barlow‐Stewart, K., Stranger, M. &amp; Otlowski, M. (2008). Investigating genetic discrimination in Australia: A large‐scale survey of clinical genetics clients. Clinical Genetics, 74(1), 20–30. https://doi.org/10.1111/j.1399-0004.2008.01016.x</mixed-citation><mixed-citation xml:lang="en">Taylor, S., Treloar, S., Barlow‐Stewart, K., Stranger, M. &amp; Otlowski, M. (2008). Investigating genetic discrimination in Australia: A large‐scale survey of clinical genetics clients. Clinical Genetics, 74(1), 20–30. https://doi.org/10.1111/j.1399-0004.2008.01016.x</mixed-citation></citation-alternatives></ref><ref id="cit19"><label>19</label><citation-alternatives><mixed-citation xml:lang="ru">Tiller, J., Otlowski, M. &amp; Lacaze, P. (2017). Should Australia ban the use of genetic test results in life insurance? Frontiers in Public Health, 5, 330, 1–4. https://doi.org/10.3389/fpubh.2017.00330</mixed-citation><mixed-citation xml:lang="en">Tiller, J., Otlowski, M. &amp; Lacaze, P. (2017). Should Australia ban the use of genetic test results in life insurance? Frontiers in Public Health, 5, 330, 1–4. https://doi.org/10.3389/fpubh.2017.00330</mixed-citation></citation-alternatives></ref><ref id="cit20"><label>20</label><citation-alternatives><mixed-citation xml:lang="ru">Underhill-Blazey, M. &amp; Klehm, M. R. (2020). Genetic Discrimination: The Genetic Information Nondiscrimination Act's impact on practice and research. Clinical Journal of Oncology Nursing, 24(2), 135–137. https://doi.org/10.1188/20.CJON.135-137</mixed-citation><mixed-citation xml:lang="en">Underhill-Blazey, M. &amp; Klehm, M. R. (2020). Genetic Discrimination: The Genetic Information Nondiscrimination Act's impact on practice and research. Clinical Journal of Oncology Nursing, 24(2), 135–137. https://doi.org/10.1188/20.CJON.135-137</mixed-citation></citation-alternatives></ref></ref-list><fn-group><fn fn-type="conflict"><p>The authors declare that there are no conflicts of interest present.</p></fn></fn-group></back></article>
