We are now faced with unprecedented progress in genomic research. Findings can be used for family planning, prediction, prevention and treatment of diseases, understand disabilities and behaviour disorder

Bezrukova, Elizaveta M.

Matsepuro, Daria M.

Trubnikova, Tatiana V.

Tomsk State University Repository

LEGAL ISSUES JOURNALVolume 8 Issue 1Jan 2020SPECIAL ISSUEProceedings of International Conference: Justice in the Genomic and Digital EraSep. 6, 2019 Tomsk, RussiaForewordExecutive PublisherPrivacy of genetic data: issues with legislation and law enforcement in the Russian Federation Anna Semiakina‘Race' and other group discrimination in the genomic era Fatos Selita, Marc Willers, Yulia KovasPublic Danger of Unauthorized Use of Human Genetic Data Dmitriy KarelinJustice in the genomic and digital era: a ‘different world' requiring ‘different law'Fatos SelitaLegal Regulation of Compulsory Genomic Registration in Russia and the UK Nikolay OlkhovikGenetic information under the civil law of the Russian FederationElena Boltanova and Maria ImekovaA PUBLICATION OFukISVUnited Kingdom Law and Society AssociationGenomic Era and New Challenges for Justice & RegulationTatiana V Trubnikova, Daria M. Matsepuro, Elizaveta M. BezrukovaMulti-national and multi-disciplinary student groups discuss cutting edge global issues -  Genetics, AI, and Justice Stephen Aremu and Anna KniazevaCombatting the discriminatory use of genetic data Marc WillersLEGAL ISSUES JOURNAL  Volume 8, Issue 1 January 2020EXECUTIVE PUBLISHER Fatos SelitaEDITOR-IN-CHIEF Markus McDowellASSOCIATE EDITORSJanet Furness, Alice Gregory, Mohammed Subhan Hussain, Yulia Kovas, Tony Meacham, Chanthema NethEDITORIAL ASSISTANT Stoyana TumbevaEDITORIAL BOARDDavid Felipe Alvarez, Budi Arsika, Marco Bocchi, Matthew Channon, Robert Chapman, Konstantinos Georgiadis, Richard Glover, Brett A. Gordon, Leanne Gray, M. Sanjeeb Hossain, Yusramizza Md Isa, Riyao Liu, Isaac Maka, Taniya Malik, Alex Matheson, Darell Pang, Nataly Papadopoulou, Ayu Satyawati, Daniel Schoeni, Nazia Shaikh, Andre Sinanan, Meixian Song, Oleg ViktorovichVoronin.Legal Issues Journal (LIJ) publishes original research on all legal matters affect­ing justice, equality and other pressing issues for societies. The journal wel­comes interdisciplinary work at the intersection of law and other disciplines, such as genetics, biosciences, philosophy, linguistics, neuroscience, medicine, and business.The Journal publishes original papers, case comments, short reports, debates and book reviews. The Journal also provides important news and interpretation on changes in the legal world and coming trends affecting law, lawyers, and so­ciety. Contribution to society, nationally and internationally, is the focus of LIJ.LIJ uses double-blind peer review process -  both the reviewer(s) and the au- thor(s) are anonymous.ISSN 2516-1210 (Print)ISSN 2515-9887 (Online)© 2020 United Kingdom Law and Society Association.All rights reserved.The United Kingdom Law and Society Association (UKLSA)www.uklsa.co.ukPATRONSLord Neuberger of Abbotsbury First President of the Supreme CourtLord Phillips of Worth Matravers Former President of the Supreme CourtHONORARY BO ARDMarc David Dight, Specialist Chancery Circuit Judge, UK  Andrew Caldecott QC, Barrister, Head of One Brick Court Chambers Stephen Rubin QC, Barrister, Fountain Court Chambers Tim Ludbrook, Barrister, 13 Old Square Chambers Fergus Randolph QC, Barrister at Brick Court ChambersBO ARD OF GOVERNORSIman Fadaei, Founder of CrowdSkills Ltd., Aha D esign, and The Positive Ideas Company Ltd.Alex Matheson, Barrister of England and Wales.Dr. Markus McDowell, Executive Publisher, Sulis International; author and editor; legal research consultant.Fatos Selita, Barrister of England and Wales; Attorney and Counselor at Law of the State of N ew  York, USA; Lecturer, Goldsmiths, University of London (Director of AIR courses), Tomsk State University (TSU); Visiting Lecturer, Higher School of Econom ics, Oregon State University; Head, Institute of Law and Ethics, TSU; Founder of the UKLSA; Founding Member, The A ccessible Genetics Consortium (TAGC).Special IssueProceedings ofInternational Conference: Justice in the Genomic and Digital EraSep. 6, 2019 Tomsk, RussiaTable of ContentsForward.....................................................................................1Executive PublisherPrivacy of genetic data: issues with legislation and law en­forcement in the Russian Federation.......................................5Anna Semiakina‘Race’ and other group discrimination in the genomic era.....11Fatos Selita Marc Willers Yulia KovasPublic danger of unauthorized use of human genetic data.....51Dmitriy KarelinJustice in the genomic and digital era: a ‘different world’ re­quiring ‘different law’.............................................................55Fatos SelitaLegal regulation of compulsory genomic registration in Russia and the UK...............................................................................71Nikolay OlkhovikGenetic information under the civil law of the Russian Federa­tion ...........................................................................................75Elena Boltanova Maria ImekovaGenomic era and new challenges for justice & regulation.....81Tatiana V. Trubnikova Daria M. Matsepuro Elizaveta M. BezrukovaMulti-national and multi-disciplinary student groups discusscutting edge global issues -  genetics, AI, and justice............ 87Stephen Aremu Anna KniazevaCombatting the discriminatory use of genetic data.................93Marc WillersLegal Issues Journal, © UKLSA. This is an Open Access article, distributed under the provisions of the Creative Commons Attribution licence, which permits unrestricted re­use, distribution, and reproduction in any medium, provided the original work is properly cited (creativecommons.org/licenses/by/4.0/)Genomic era and new challenges for justice & regulationTatiana V. TrubnikovaiLaw Institute, Tomsk State UniversityDaria M. MatsepuroInternational Centre for Research in Human Development, TomskState UniversityElizaveta M. BezrukovaInternational Centre for Research in Human Development, TomskState UniversitySummary. We are now faced with unprecedented progress in genomic research. Findings can be used for family planning, prediction, prevention and treatment of diseases, understand disabilities and behaviour dis­orders and to investigate crimes. DNA can be used to identify victims of disasters, locate missing persons, and even monitor trafficking of goods such as ivory or wood. They can also be used to the harm of individuals and society, including through discrimination (e.g. ac­cess to health, education) and unreasonable and unjusti- 11 Corresponding author. Email: tmbn@mail.ru81Legal Issues Journal 8(1) January 2020fied state interference in the private life of individuals (e.g. through surveillance)2.Keywords: DNA profile, genome editing, genome register regula­tion, human rights, private and public balancing of interests.Genomic data banks are growing rapidly. The first DNA database was created in Great Britain in 1995 and in 2017 there were DNA profiles of 4 million people, which is nearly 6% of the whole UK population3. But some countries have genetic data of almost the entire population, for example Iceland. Its database contains geno­types of the entire population (about 300,000 people)4. (*Popula- tion for 01.01.2019 consists 357 050).Created in 2002, INTERPOL’s DNA database currently contains more than 180,000 profiles contributed by 84 member countries. According to Interpol’s Global DNA survey results of 2008, 120 countries use DNA profiling to investigate criminal cases, 54 of which currently had national DNA databases and 26 planned to introduce them5.This year in Russia, the decree “On RF national policy in chemi­cal and biological security till 2025 and further perspective” was2 Selita F. Genetic Data Misuse: Risk to Fundamental Human Rights in Developed Economies. // Legal Issues Journal, 7(1), 2019.3 About UK Biobank //http://www.ukbiobank.ac.uk/about-biobank-uk/ (Date of access 21.11.2019).4 Генетический паспорт: что это такое, и зачем он нужен россиянам // https://med.vesti.ru/articles/polezno-znat/geneticheskij-pasport-chto-eto- takoe-i-zachem-on-nuzhen-rossiyanam/ (Date of access 15.10.2019).5 DNA can play a crucial role in convicting -  or clearing -  suspects of a crime, and can also be used to identify missing persons // https:// www.interpol.int/How-we-work/Forensics/DNA (Date of access 13.12.2019).82Genomic era and new challenges for justice and regulationsigned, introducing a system of genetic passports or DNA-profiles. Such passports will consist of two parts. The first part will be pre­sented as a raw data in digital format which can be duly explained only by qualified specialist. And the second one is interpretation of this data. The last part will be updated if and when new genetic markers are discovered.Genetic implications create new challenges for justice, particu­larly for criminal justice, demanding serious thought, scientific ba­sis and public discussions. Challenges for criminal justice, related to development of genomic research, include:1. U sing of D N A  and biological material for the identification of a criminal— raising issues of getting, storing and transferring b iologi­cal materials and D N A -profiles and regulation of biobanks activi­ties.An example illustrating this point is the case of S. and Marper v. United Kingdom 20086 decided by the European Court of Human Rights (Strasbourg). The case concerned the retention by the au­thorities of the applicants’ fingerprints, cellular samples and DNA profiles after criminal proceedings against them were terminated by an acquittal in the case of S. and discontinued in the case of Marper7.The Court held that indiscriminate “blanket” retention of finger­prints, cellular samples and DNA profiles following acquittal is in violation of article 8 (right to respect for private and family life) of the European Convention on Human Rights8.6 Case of S. and Marper v. the United Kingdom (No.30562/04&30566/04) http://hudoc.echr.coe.int/eng?i=QQ1-9QG51 (Date of access 15.12.2019).7 Grand Chamber judgment. S. and Marper v. United Kingdom 04.12.08. Press Release - Grand Chamber Judgments Published on 04/12/2008 http:// hudoc.echr.coe.int/eng-press?i=003-2571936-2784147 (Date of access 15.12.2019).8 5 European Convention on Human Rights https://www.echr.coe.int/ Documents/Convention_ENG.pdf(Date of access 15.12.2019).83Legal Issues Journal 8(1) January 20202. Origins of violence have multifactorial structure.3. The recent international studies identify about 40 genes related to aggressive behavior.9 This means that violent behavior is deter­mined by com plex and variative?? interactions between both en v i­ronmental (social, cultural and etc.) and biological factors. This fact should be taken into consideration in legal regulation, prevention of crime and punishment/sentencing. A lso, it poses the fundamental question of equality before the law.4. Developm ent of genetics is hastening the emergence of new types of socially dangerous behaviour which partly should be subjected to a criminal law. This is especially related to potential m isuses of combined genom ic data and other big data.It is hard to find out exact statistics on misuse and harm in medical genetics. However, there is no universal international mechanism to regulate use of data for all stakeholders and so we faced with numerous issues.There are international efforts and instruments in place attempt­ing to regulate use of genetic data -  the turning point made in 1997 when the Convention for the Protection of Human Rights and Dig­nity of the Human Being with regard to the Application of Biology and Medicine (ETS No. 164, 1997)10 was opened for signature in Oviedo (Spain) and also known as ‘Oviedo Convention’. This was the first multilateral binding instrument entirely devoted to biolaw and into force on 1 December 1999. It has accumulated the effort on the part of the Council of Europe to keep pace with develop­ments in the field of biomedicine and introduce principles applica­ble to any medical act and «new» biomedical technologies (trans­9 Zhang-James, Y., Femandez-Castillo, N., Hess, J.L. et al. An integrated analysis of genes and functional pathways for aggression in human and rodent models. Mol Psychiatry 24, 1655-1667 (2019).10 Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine https://rm.coe.int/168007cf98 (Date of access 15.10.2019).84Genomic era and new challenges for justice and regulationplantation, biomedical research and genetics)11. The international treaty based on the fundamental connection between human rights and biomedicine was signed by 35 countries and ratified by 29 as some nations like UK considered it too strict. Provisions related to human genome were also incorporated to the Convention (see Chapter IV). Finally, Additional Protocol concerning Genetic Test­ing for Health and Statement on Genome Editing Technologies was implemented by the Council of Europe.Conclusion. All benefits brought by genetics research to various fields, such as medicine, social life and law, have very complex nature. Implementation of the results of genomic research must be based on adequate balanced model of legal regulation and self-reg­ulation as well as high ethical standards both on national and in­ternational levels. It requires efforts of interdisciplinary research teams and wide public discussions in order to protect individual, public and state interests.Acknowledgement: This work was supported by the Russian Min­istry for Education and Science project No.25.8663.2017/9.10.11 Andorno R., The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law, JIBL Vol 02, 2005.85

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Genomic era and new challenges for justice & regulation

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