Dying teenage girl will be forever young after being cryogenically frozen

Noel Baker details the rare, tragic case of a teen cancer victim who fought to be able to freeze her body

“I don’t want to die but I know I am going to... I want to live longer... I want to have this chance...”

And now she has it, with extraordinary details emerging of how a 14-year-old girl with terminal cancer went to a British court to ensure she could be cryogenically frozen, with a view to being ‘cured’ and reawoken at some point in the future.

The case might read like something from the pages of a science fiction novel, but it has also propelled the issue of potentially postponing death, and the ethical debate around it, around the world.

At its heart is a family tragedy. As reported yesterday, the teenage girl, referred to as ‘JS’, lived with her mother in London and was diagnosed with a rare form of cancer last year.

Last August, she was told her illness was terminal and active treatment for it came to an end. The magnitude of knowing, at such a young age, that you were nearing death is a terrifying prospect for anyone, but the girl’s narrative swerved when she began researching the possibility of being cryogenically frozen in the hope that at some point in the future she could be “woken up” and cured of the illness that has already ended her life.

It was reported that JS told a relative: “I’m dying, but I’m going to come back again in 200 years.” At the age of 14, she was too young to make a legally recognised will and so needed the permission of both of her parents to carry through her wish to be cryogenically frozen.

There was added complexity, as her parents are divorced and her father was not in favour of the plan. It emerged the girl had not seen her father since 2008 and that he also has cancer.

It meant that JS had to launch legal proceedings to win the right to have her wishes on her death carried out, and while she was too ill to attend court, she was distinct in expressing her wishes, including that she not be buried underground. She also wrote a letter containing the above lines, about wanting to live longer and have this chance.

The decision for the judge hearing the case, Mr Justice Peter Jackson, was whether to rule that her mother, who backed her daughter’s wish to be cryogenically preserved, should be the only person allowed to make decisions about the disposal of her body.

On October 6, not long before the girl died, the judge ruled that JS’s mother should have the sole right to decide what happened to her daughter’s body, although he emphasised that he was not making any ruling regarding any possible cryonic freezing.

Illustrating the complexity of the case, he also granted an injunction preventing the girl’s father from attempting to make any arrangements for the disposal of his daughter’s body. However, in addressing the father’s concerns the judge said: “No other parent has ever been put in his position.

“It is no surprise that this application is the only one of its kind to have come before the courts in this country — and probably anywhere else.”

The girl’s father had been opposed to the cryogenic freezing process, claiming in court that in all likelihood it would not work and that his daughter’s family would be put through unnecessary expense and distress as a result.

The alternative scenario — that the process would ultimately succeed — was also addressed by the father in a statement to the judge.

“Even if the treatment is successful and she is brought back to life in, let’s say, 200 years, she may not find any relative and she might not remember things.

“She may be left in a desperate situation — given that she is still only 14 years old — and will be in the United States of America [where her body was to be stored].”

Dying teenage girl will be forever young after being cryogenically frozen

The father later changed his mind and told the court: “I respect the decisions she is making. This is the last and only thing she has asked from me.”

However, he had one condition, which was that he could see his daughter’s body after she died, to say goodbye. Both the girl and her mother refused, meaning the judge had to make a decision on what he described as “a tragic combination of childhood illness and family conflict”.

The judge said that he had decided JS had the capacity to bring the legal action and that she was a “bright, intelligent young person”. He also referred directly to the lack of regulation, stating: “It may be thought that the events in this case suggest the need for proper regulation of cryonic preservation in this country if it is to happen in the future.”

Before her death, the girl was fully aware that the court case had succeeded and it has been argued that it gave her comfort before her death on October 17. Her maternal grandparents raised the £37,000 (€43,000) so that her body to be frozen and taken to the storage facility in America with the assistance of Cryonics UK.

It is understood that around 350 people have been frozen since the 1960s, although claims that Walt Disney is among the number is an urban myth. However, just two countries offer cryogenic freezing, Russia and the US, which has two companies offering the services — the Cryonics Institute and Alcor.

However, details in a note sent by the hospital made for “unhappy reading”, according to the judge, who remarked on “pressure being placed on the hospital to allow procedures that had not been agreed” while the girl’s mother was said to have been “pre-occupied with the post-mortem arrangements at the expense of being fully available to JS”.

He added: “The way in which the process was handled caused real concern to the medical and mortuary staff.”

It highlighted the technical elements that need to fall into place for a body to be frozen successfully, in what is arguably a half-formed science. There is no certainty that it will ever fully work and, in this case, give life back to a teenager who had it cruelly taken away. But as one of the co-founders of Cryonics UK, Garrett Smyth, said: “It seems like an obvious thing to do to try and stay alive.”

Ethical debate

While the UK court ruling which emerged yesterday was not focussed directly on the right to be cryogenically frozen, it prompted debate over the ethics of the process.

Speaking on RTÉ’s Today with Sean O’Rourke, Dr David Shaw of the Institute for Biomedical Ethics in the University of Basel outlined how there is no guarantee that the procedure will work — in other words, that a body can be ‘unfrozen’. There is the cost involved, initially to the family involved and then in the longer-term preservation of the body.

Dr Shaw said resources at hospital level also have to be diverted when the person dies, and there are bigger questions regarding the procedure if science ever does catch up with theory.

For example: Who would decide when to unfreeze a body? Those decisions would be taken by some not yet born.

As assistant professor of law in Trinity College Dublin Andrea Mulligan pointed out, ownership of a body is a legal grey area. And if too many people undertake the process, it would have ramifications for a world currently experiencing massive population growth, as would any medical breakthrough that would stop or even reverse the aging process.

 


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