Legal protection of genetic data has been discussed at TSU

At the TSU international conference, Justice in the Genomic and Digital Era, experts discussed ethical and legal aspects of genetics. The conference was attended by specialists from the UK and USA, TSU students, and the students from Goldsmiths, University of London, who are at TSU for a two-month internship.

TSU has become one of several world centers where geneticists, lawyers, philosophers, and representatives of other scientific areas have begun an active discussion of the legal protection of genetic data. At TSU such structures as the International Center for Human Development, the TSU Institute of Law and Ethics, and the Accessible Genetics Consortium are engaged with these questions.

– The human genome provides a wealth of information about a person. From this information you can extract knowledge about many of a person’s characteristics: predisposition to diseases, some abilities or disorders, – explains Yulia Kovas, professor of genetics and psychology, head of TSU’s Laboratory of Cognitive Research and Psychogenetics, and director of the International Laboratory for Interdisciplinary Studies of Individual Differences in Learning (InLab), Goldsmiths, University of London (UK). – Naturally, research in this area is designed to benefit every person, but there are always some other forces that pursue selfish interests. Therefore, it is clear that this information can be used to a person’s detriment: for example, in life insurance, insurance for certain diseases, selection of people in professional activities and training, and for various other types of discrimination.

The discussion of ethical and legal aspects in genetics is only beginning to gain momentum; this is a completely new area in law and legal regulation. Experts are sure that now it is necessary to form interdisciplinary groups in which genetics, biologists, cognitive scientists, lawyers, and specialists in ethics, philosophy, and history would come together to find a solution to such a global problem.

In 2018, at TSU’s International Center for Research on Human Development, the Institute of Law and Ethics (ILE) was opened. The Institute brings together lawyers, academics, and politicians to work on the legal and ethical implications of genetic research, including updating laws to protect individuals and ensure the fair use of genetic research results. The Institute collaborates with international partners, including in the UK, USA, China, and Canada.

– The collaboration between Tomsk and the United Kingdom is a working group focusing on the study of the legislative and ethical components of genomics, namely, what needs to be done to protect individuals and science in general from improper handling of genetic information,- said Fatos Selita, the Institute’s supervisor, barrister in England and Wales, and attorney-at-law in New York State.

He also noted that he was interested in developing laws under which a person’s identity would be fully protected.

– This does not have to be connected with any particular country, because if these laws are developed in one place, then they are more likely to appear in others, added Fatos Selita.

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