<Dr. Anton Burkov, PhD (Cambridge), LLM (Essex), Legal director of the NGO Sutyajnik, Alina Sablina’s relatives representative before the European Court of Human Rights>
After a road accident, Alina Sablina was left in a coma. Alina’s parents sat next to her bed in the hospital from the day after the accident. On the sixth day, Alina passed away. A month after the funeral, while filling out paperwork , Alina’s mother came across a forensic report. The report detailed the removal of three of her daughter’s organs by Moscow City Clinical Hospital No. 1.
Another shock came with the news that another four organs were missing from Alina’s body and from the list of removed organs. Neither the hospital, Moscow Department of Health, the procurator’s office or the investigative committee provided any explanation for this discrepancy.
Alina never expressed her consent to donate her organs. Alina’s parents were never informed about planned organ transplantation and thus not asked for consent for the organ removal of their deceased daughter. This is despite their constant physical presence at the hospital and numerous discussions with the hospital’s doctors during long six days at the intensive therapy unit. In fact, Alina’s parents were not allowed to see Alina the last day of her life with no reasons given. Her parents believe she was being prepared for removal of her organs.
Alina´s relatives have complained to the European Court of Human rights, alleging that Russian authorities have violated their human rights under the European Convention on Human Rights. Our hope is that the European Court of Human Rights will ignite law reform on this issue in Russia.
The 1992 Federal Law on transplantation of organs and/or tissues of human beings is a poor three-page long text, full of gaps which create conditions for medical personnel to secretly harvest organs. In particular, Article 8 of this Law establishes a long-condemned presumption of consent (opt-out system) on the part of an individual or their close relatives to the post-mortem removal of the deceased’s organs for transplantation. However the problem is not in presumed consent per se but in the lack of obligation on doctors to actually inform parents of the planned transplantation. Doctors do not inform the deceased person’s relatives about planned or performed organ transplantations due to lack of provisions requiring them to actively seek consent. Lack of relative’s knowledge secures presumed consent, and thus guarantees constant supply of unrecorded organs for high demand.
Under Article 3 of the European Convention on Human Rights, Russia has pleaded not to subject anyone to inhuman or degrading treatment. What Alina’s parents went through is exactly such treatment. Under Article 8, Russia is under an obligation to respect family life. The state must guarantee that only family members can make a decision regarding organ removal of a deceased family member. Alina’s family was not given the right to make such a decision. Under Article 10, Russia is under an obligation to inform the family of a deceased person in order to provide the family the freedom to express their opinion about organ removal. Alina’s parents were ignored and are being ignored still.
Over the two decades of the existence of artificial presumed consent and organ removal without the knowledge of family members, no doctor has ever been brought to justice for secret organ transplantation. Relatives who lost their loved ones in the hospital after an accident must be aware that they have most likely buried their family member with one or several organs missing.
Recently, there was a number of bills on organ transplantation drafted. All of them miss the most important part – legal status of relatives of the deceased who must be entitled to make decisions about treatment of their family member after death. Consent to organ removal must be informed. Only in exceptional circumstances of no immediate access to relatives consent, can consent be presumed.
The legislator must develop institutions which will facilitate obtainment of prior informed consent. The wealth of measures that are in place in other states is enormous and can be adjusted to the Russian reality.