Since 1 March 2026, pursuant to Resolution No. 822 of the Government of the Russian Federation of 31 May 2025, the Russian healthcare system has been operating the Federal Register of Persons with Certain Diseases. The Federal Register includes detailed information on a newborn’s sex and information on the “detection in a child of congenital anomalies (malformations), deformities, or chromosomal abnormalities,” that is, data capable of revealing variations in sex characteristics in children at birth. From a human rights perspective, information of this kind should be accessible only to the person concerned and, during childhood, only to their parents or legal guardians and the limited number of medical professionals directly involved in their care, subject to strict safeguards of confidentiality and privacy. The Association of Russian-Speaking Intersex People (ARSI) draws attention to the following vulnerabilities in the operation of such a register from the perspective of the rights of people born with variations in sex characteristics.
Lack of sufficient safeguards for the protection of sensitive private-life data
The Resolution defines categories of users of the Register, including the Ministry of Health, Roszdravnadzor, the Ministry of Internal Affairs, Rosstat, executive authorities of the constituent entities of the Russian Federation, medical organisations, and, in certain cases, pharmaceutical organisations. In addition, it expressly provides for the Register’s interaction with the federal population register, the interagency electronic interaction system, the compulsory medical insurance system, state health information systems of the constituent entities of the Russian Federation, medical information systems of state, municipal, and private medical organisations, information systems of the Federal State Statistics Service, as well as other state and other information systems.
At the same time, the Resolution does not provide sufficient clarity as to which specific categories of data are transferred between these systems, which users may gain access to information related to pregnancy or newborns, and what additional safeguards apply to data capable of revealing variations in sex characteristics. Moreover, the rules expressly state that exclusion of entries from the Register is not provided for.
The Resolution does not explain how data capable of revealing variations in sex characteristics will be recorded, minimised, de-identified for secondary use, or protected against re-identification. Even if some of the data are later de-identified and access to them is formally restricted, datasets relating to rare variations in sex characteristics may in practice remain highly identifying where records include combinations such as place or institution, date and time of birth, the newborn’s sex marker, and an ICD-coded perinatal condition. In small regions or within a single hospital, this may make it possible to determine which child or family is concerned.
Once entered into centralised systems, information about sex characteristics may spread across other medical and administrative systems. This creates conditions for the circulation of such information across systems and requires additional safeguards excluding its use for purposes unrelated to medical care. In addition, this may create obstacles to the correction of records, lead to compelled disclosure of information, mismatches between documents and entries in different registers, and make it more difficult to update a child’s records when new information emerges or where the original classification does not reflect the reality of their life.
In addition, one of the most serious problems is the risk of a database leak, which is especially acute in a context where large-scale personal data leaks are recurrent. In such circumstances, a centralised federal repository containing identifying data, information on a newborn’s sex, and congenital sex characteristics creates a risk of disclosure, misuse, blackmail, discrimination, and irreversible loss of control over one of the most sensitive forms of information about a person.
Pathologising classification and its consequences
ARSI also expresses concern that the inclusion of information on congenital sex characteristics in a nationwide register may describe variations in sex characteristics through pathologising classificatory categories that fail to take into account the dignity, right to privacy, and bodily autonomy of intersex children.
The Register may create administrative framework in which pregnancies and the births of children with variations in sex characteristics are viewed primarily through the lens of statistical accounting, classification, and control. When a child is born with variations in sex characteristics, families may already face pressure from medical professionals, stigma, and uncertainty. The operation of the Register may increase the weight of administrative considerations in decision-making affecting the rights and interests of the child. Such a system requires additional safeguards excluding biased counselling and practices associated with medically unnecessary interventions.
Recommendations
In order to bring this initiative into line with international human rights standards, ARSI proposes:
