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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-2023-2-2-53-73</article-id><article-id custom-type="elpub" pub-id-type="custom">lexgen-19</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>Lex Genetica: сравнительно-правовые исследования</subject></subj-group><subj-group subj-group-type="section-heading" xml:lang="en"><subject>Lex Genetica: Comparative Legal Analysis</subject></subj-group></article-categories><title-group><article-title>Конфиденциальность пациента и права родственников в генетических исследованиях</article-title><trans-title-group xml:lang="en"><trans-title>Patient’s Privacy and Relatives’ Rights in Genetic Research</trans-title></trans-title-group></title-group><contrib-group><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Московкина</surname><given-names>Е. К.</given-names></name><name name-style="western" xml:lang="en"><surname>Moskovkina</surname><given-names>E. K.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Елизавета К. Московкина, руководитель группы правового обеспечения </p><p>Москва </p></bio><bio xml:lang="en"><p>Elizaveta K. Moskovkina, the Head of the Legal Support Group </p><p>Moscow </p></bio><email xlink:type="simple">ekmoskovkina@msal.ru</email><xref ref-type="aff" rid="aff-1"/></contrib></contrib-group><aff-alternatives id="aff-1"><aff xml:lang="ru"><institution>ООО «Биотек кампус»</institution></aff><aff xml:lang="en"><institution>LLC 'Biotech campus’</institution></aff></aff-alternatives><pub-date pub-type="collection"><year>2023</year></pub-date><pub-date pub-type="epub"><day>16</day><month>02</month><year>2024</year></pub-date><volume>2</volume><issue>2</issue><fpage>53</fpage><lpage>73</lpage><permissions><copyright-statement>Copyright &amp;#x00A9; Московкина Е.К., 2024</copyright-statement><copyright-year>2024</copyright-year><copyright-holder xml:lang="ru">Московкина Е.К.</copyright-holder><copyright-holder xml:lang="en">Moskovkina E.K.</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/19">https://lexgen.msal.ru/jour/article/view/19</self-uri><abstract><p>В статье рассматривается коллизия права пациента на конфиденциальность врачом и интересов его родственников обнаружить риск здоровью раньше, чтоб начать лечение незамедлительно. Автор производит этико-правовой анализ существующих положений, регулирующих вопросы, а также делает попытку поиска практических решений поведения врача.</p><p>Подход, согласно которому конфиденциальность пациента может быть раскрыта его родственникам с его согласия, является наиболее бесспорным и приемлемым согласно законодательству разных стран. Врач играет роль помощника для того, чтоб передать информацию о генетических рисках родственников пациента, различные механизмы доступны для этого (например, письмо о рисках, возможность пригласить родственника на консультацию).</p><p>Таким образом, конфиденциальность – не абсолютное право и может быть ограничено, но какие основания для этого будут признаны этичными? Законодательство предписывает врачу сохранять конфиденциальность пациента, при этом профессиональные обязанности врача заключаются в помощи людям в широком смысле этого слова. В результате этого и в свете того, что он несет бремя знания, врач вынужден преодолевать серьезную моральную дилемму и находить компромисс: как предупредить риски здоровья родственника и даже спасти его от развития серьезных заболеваний и не подорвать доверие пациента.</p><p>Законодательство большинства рассматриваемых стран не дает ответа на данный вопрос, признавая право на конфиденциальность не абсолютным, но превалирующим правом в сравнении с интересами родственников. При этом нормы мягкого права рассматривают проблему более детально, предлагая более прогрессивные подходы – в частности, в контексте генетики предусмотреть конфиденциальность на семейном уровне. Вынесение таких подходов из актов мягкого права в область законодательства, позволит снять часть нагрузки по принятию решения с врачей.</p></abstract><trans-abstract xml:lang="en"><p>The article discusses the collision of patient's right to confidentiality and their relatives interests to know a risk to the health earlier and to increase chance to receive therapy promptly. The author makes an ethical and legal analysis of the existing provisions governing the issue, and attempts to find practical solutions to the question of the doctor-patient relationship.</p><p>The approach that privacy can be limited according to the decision of the patient is the most doubtless according to legislation of considered countries. Doctor’s role is to assist to share patients’ genetic risks with concerned relatives and explains how it effects the health and, several tools for this are offered (e.x. letter about genetic risks with recommendations, opportunity to invite relative for consultation).</p><p>So, privacy is not absolute right and can be limited, but in what cases it is ethical? Legislation orders doctor to save patients’ rights. At the same time professional duty of physician to help people in a broad sense.</p><p>As a result, and due to burden of knowledge doctors are have to overcome the serious moral dilemma and find the compromise – how to inform patients relatives about risks and even prevent diseases and not to undermine trust of the patient. The legislation of most of the countries does not answer this question, recognizing the right to confidentiality not as an absolute right, but as a prevailing right in comparison with the relatives’ interests. At the same time, the problem is more detailed in “soft law” acts and more progressive approaches are proposed – to consider confidentiality on the family level (not individual) in sphere of genetics. Moving such approaches from soft law acts into the field of legislation will remove part of the decision-making burden from doctors.</p></trans-abstract><kwd-group xml:lang="ru"><kwd>генетическая информация</kwd><kwd>конфиденциальность данных</kwd><kwd>права родственников</kwd><kwd>обязанности врачей</kwd><kwd>халатность</kwd><kwd>добровольное информированноe согласие</kwd></kwd-group><kwd-group xml:lang="en"><kwd>genetic information</kwd><kwd>data privacy</kwd><kwd>relatives' rights</kwd><kwd>physician’s duties</kwd><kwd>negligence</kwd><kwd>informed consent</kwd></kwd-group></article-meta></front><back><ref-list><title>References</title><ref id="cit1"><label>1</label><citation-alternatives><mixed-citation xml:lang="ru">Сахипгареева, А.Р. (2020). 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