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Grieving Russian mother challenges organ donation law

Yelena Sablina holds a photo of her daughter Alina who died after being hit by a speeding car
AFP

Moscow (AFP) – Yelena Sablina was stunned when she came across the forensic record of her late 19-year-old daughter, who died days after a speeding car hit her at a Moscow pedestrian crossing.

Going through the file she discovered that her daughter Alina’s heart, kidneys and a number of other organs had been removed –- without her family’s knowledge or consent.

Since making the grim discovery in February 2014, one month after Alina’s death, Sablina has made it her mission to challenge a Russian law that allows doctors to remove the organs of dead people without needing permission. 

“From day one doctors were looking at her as an organ donor,” Sablina said of her only child, who spent six days in a coma before she died. 

Sablina claims that on the last day of Alina’s life, flustered doctors barred her from entering her daughter’s room without explanation.   

“It became clear to me that something had happened,” Sablina told AFP in a telephone interview from her home in the central city of Yekaterinburg. “The next day, we received a call from an undertaker who said that Alina had died.”   

Sablina said that doctors’ actions that day had made her concerned that they may have “helped” Alina die and harvested her organs.

The Moscow hospital that treated Alina, which told Russian media in 2014 that it had acted lawfully, could not be reached for further comment.

Sablina’s case reached all the way to Russia’s Constitutional Court and in February, her complaint about the legislation on the removal of organs without consent, in place since 1992, was rejected. 

– ‘Were organs sold off?’ – 

Presumed consent laws –- also known as “opt-out” laws –- are found in a number of European countries, including France, Spain and Austria. 

Under this system a person, or his or her family, must express the desire not to have organs removed at death. If not the doctors assume consent. 

In other countries, including the United States, people must explicitly express consent to have their organs harvested upon death.

Experts say that presumed consent, which tends to increase the number of organs harvested, does not in itself foster human rights violations and can help save lives.  

Harvard law professor Glenn Cohen told AFP that concerns over such laws usually focus on “the cost and infrastructure as well as pragmatic political considerations”. 

But in Russia the worry for people like Sablina is that a lack of transparency means that unscrupulous doctors could abuse the system. 

Anton Burkov, the lawyer representing Sablina, said doctors recorded the removal of Alina’s heart and kidneys, but there was no paper trail for the removal of four other organs, including a portion of her right lung.

“Why did they remove six organs from Alina’s body but only wrote they had removed two?” Burkov said. “Were these organs sold off? We have no way of proving this.”

Russian law does not oblige doctors to inform the deceased’s family that organs have been harvested.   

Despite its liberal donor law, Russia generally conducts fewer organ transplants than Western countries, with some 1,500 transplants performed in 2015, according to the health ministry. There were nearly three times more transplants in France in 2014.

Only 44 hospitals in less than one third of Russian regions perform transplants, the ministry said.

– ‘Delicate topic’ – 

To garner support for her cause, grieving Sablina wrote to the prosecutor general, the human rights ombudsman and the Russian Orthodox Patriarch to tell her daughter’s story.   

“I was told this a delicate topic, that no one will want to get involved because there are no precedents to change the law,” she said.   

Some federal lawmakers over the years have pressed for the adoption of a consent-based system, but their bills were rejected.   

Burkov, who has filed a case with the European Court of Human Rights (ECHR), points to bureaucratic inertia as the cause of Russia’s reluctance to reassess a system he says is designed “not to force anyone to think”.   

“If there is no ECHR decision, nothing will change in Russia,” he said. “It will remain in place unless you pressure them to change it.”   

The Russian Orthodox Church, which enjoys close ties with the government, has also criticised the practice but has not challenged the status quo.   

In response to a 2014 letter from Sablina, the Moscow Patriarchate said the Church considered that the presumed consent system was an “unacceptable violation of human freedoms.”   

Other religious leaders have deplored the practice. Chief rabbi Berl Lazar said last month it was “inconceivable” that organs could be removed without the consent of the deceased’s family.  

As for Sablina, who is married but whose husband is not part of the legal procedures, nothing can ever bring back her daughter but she says she is trying to help provide safeguards for others confronted with her nightmare situation. 

“People are being turned into pieces of meat,” she said.

“The state has given itself unlimited powers to manage our lives down to our organs.”

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