SUMMARY. This article aims to evaluate the “gray areas” in Russian legislation regulating the activities of medical organisations for the processing of genetic data as personal data. The analysis includes the relevance of the topic for the economy, science, and law in Russia, and current legislation from the perspective of gaps and enforcement issues. The paper also provides brief recommendations for improving legal regulation in the field of genetic data processing and associated risks.

Genetic science has provided new knowledge that has the potential to reduce ‘race’ discrimination. This includes findings that around 95% of human genetic variability is present within any population; and that most human traits are influenced by a complex combination of many genetic and environmental factors. Despite this knowledge, racially discriminatory practices persist internationally, including segregation; unfair sentencing; state surveillance of children; and involuntary sterilisation. Moreover, there is an emerging risk that DNA may be used to propel harmful discriminatory practices. For example, new ‘DNA-based’ groups may emerge in the context of polygenic prediction – aggregating multiple genetic risks into individuals’ combined risk indexes. Such DNA-based groups could be viewed as ‘new races’ - adding yet another category to the already heterogenous definition of ‘race’. This paper reviews the genetic advances directly relevant to, and their impact on, ‘race’ and other group discrimination; and assesses current UK and international discrimination practices and effectiveness of the laws in place prior to and in the genomic era. The paper concludes that current laws provide insufficient protection from ‘race’ and other group discrimination and still reflect people’s beliefs in entrenched differences between ‘races’. The paper asserts that the very use of the term ‘race’ in equality legislation is problematic due to inconsistencies in definition across key legislations and its historical association with domination. Justice systems must update laws to reflect current genetic knowledge and to address existing and emerging risks of discrimination.

Scientific and technological progress, the development of technologies, the consistent accumulation of empirical material on human genetic data and their potential value will objectively expand the conditions for their both legitimate and unlawful use. Therefore, the question of legal protection of human genetic data may arise in the very near future.

Discoveries in the last two decades have created a ‘different world’, which requires ‘different’ laws. They have created a world where: enormous information on people’s past, present and future can be extracted from DNA alone; the DNA of millions of people has already been sequenced; the cost of sequencing is around 30 million times less than in 2003; additional detailed personal information is collected from numerous sources, such as mobile phones, hospitals, bank cards; this information is shared internationally among numerous powerful private and State organisations; and use of this information can be highly profitable for these organisations. Under these conditions, current law is unable to fully protect rights such as that of data protection, privacy, a fair trial, and non-discrimination on genetics and other basis – rights valued by societies. For the law to serve its key purpose, it now must adapt (evolve) to this fast and fundamental change in the ‘environment’. In relation to protection from data misuses, as privacy (genetic and other) is not possible, laws are required which can minimise negative impact of data misuses. Key stakeholders (e.g. judges, policymakers) would need to understand how genes work and how genetic information is used in order to appreciate the urgency of updating laws and to build effective protection.

This article analyzes the legal foundations of compulsory genomic registration in Russia and the UK. The paper assesses the prospects for the development of Russian legislation and law enforcement practice on ethical issues related to the right of access to genomic data, its confidentiality during storage, transmission and destruction.

This article assesses genetic information in the system of civil rights under civil law of the Russian Federation.

This article assesses genetic information in the system of civil rights under civil law of the Russian Federation.

SUMMARY. 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 unjustified state interference in the private life of individuals (e.g. through surveillance).

Leading academics who spoke at the conference “Justice in the Genomic and Digital Era,” an international conference hosted by The Accessible Genetics Consortium (TAGC), explained that gaps exist in existing laws governing the protection of information extracted from sequenced genetic data. These gaps are observed across different continents. For example, in the United States, specific laws such as the Genetic Information Nondiscrimination Act (GINA) 2008, and in Canada, the Genetic Non-Discrimination Act 2017, provide limited protection to individuals. In the European Union, even the most relevant legislation to date, the General Data Protection Regulation (GDPR), provides insufficient protection; for example, one provision may provide protection while another may offer countervailing effects. These limitations arise, among other factors, from the high economic value and commercial interests associated with big data, including data generated from sequenced genetic information, as well as the need for such genetic data for various research purposes in medicine, science, and other fields. As the concluding student session of this intensive conference, students were required to undertake a practical task. Students from law, science, psychology, and linguistics backgrounds were grouped to work collaboratively on diverse topics relating to genetic issues. They were asked to imagine that they were members of the Interdisciplinary Council on the Use of Genetic Information in the Justice System. Their objective was to develop guidelines for policymakers concerning the use of genetic information in the justice system, drawing on the information and insights presented during the earlier conference sessions. In developing their proposals, students were required to consider several issues, including single-gene genotyping versus whole-genome sequencing; single-gene risks versus polygenic risk scores; gene–environment interactions; confidentiality and anonymity; the use of different factors as aggravating and mitigating circumstances in sentencing; genetic literacy and expertise among justice-system stakeholders; and the use of genetic information in the justice system in the era of artificial intelligence, including applications such as robotic judging.

There have been tremendous advances in genetic science that have the potential to bring enormous benefits to humanity. However, there are concerns that genetic data could also be misused as a tool for discriminating against groups, such as ethnic minorities or people with genetic predispositions to health conditions. Such discrimination could occur in a variety of areas, including employment, healthcare, education, policing and the justice system, and the provision of goods and services, such as insurance. The concern that genetic data could be used for discriminatory purposes is rooted in bitter and painful historical experience. Crimes against humanity based on racism have left a lasting mark on our collective history, including the murder of approximately 1.5 million Armenians during the 1915 genocide, as well as the murder of more than 6 million Jews and approximately 500,000 Roma during the Holocaust of World War II, known by Roma as the ‘Porajmos’. Discrimination against Black people and other ethnic minority groups has also been influenced by discredited theories of ‘race’, such as those promoted by the Eugenics movement in the nineteenth century. Nevertheless, discriminatory practices have persisted in many States, including, for instance, the forced sterilisation of Roma women and the ethnic profiling of minority groups by the police. In 1997, UNESCO issued the Universal Declaration on the Human Genome and Human Rights, which stipulates in Article 6 that: ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.’ In my view, there is a need to update equality and discrimination legislation in States to include a prohibition on the use of genetic data for discriminatory purposes in accordance with Article 6 of the UNESCO Declaration. In the meantime, there is an urgent need to educate the judiciary, lawyers, and the public about the risks associated with the use of genetic data and the safeguards that must be in place to ensure that its retention and distribution are lawful. In the absence of up-to-date legislation, courts can develop case law to protect individuals and groups from discriminatory practices by applying existing laws. However, such developments can take time and may lead to inconsistencies and anomalies. Nevertheless, decisions of supranational courts, such as the European Court of Human Rights, could contribute significantly to advancing the protection afforded to individuals and groups in a coherent and consistent manner. There is likely to be resistance to the introduction of legislative safeguards from scientists, corporations, and politicians who are keen to exploit the use of genetic data to its full potential within a relatively relaxed regulatory regime, even if such a regime allows some scope for discriminatory uses. Such resistance will need to be overcome if the most vulnerable members of society are to be protected from the misuse of genetic data.