14-year-old cancer sufferer wins right to be preserved for future
A 14-year-old girl who said before dying of cancer that she wanted a chance to live longer has been allowed by the high court to have her body cryogenically frozen in the hope that she can be brought back to life at a later time.
The court ruled that the teenager’s mother, who supported the girl’s wish to be cryogenically preserved, should be the only person allowed to make decisions about the disposal of her body. Her estranged father had initially opposed her wishes.
During the last months of her life, the teenager, who had a rare form of cancer, used the internet to investigate cryonics. Known only as JS, she sent a letter to the court: “I have been asked to explain why I want this unusual thing done. I’m only 14 years old and I don’t want to die, but I know I am going to. I think being cryo‐preserved gives me a chance to be cured and woken up, even in hundreds of years’ time.
“I don’t want to be buried underground. I want to live and live longer and I think that in the future they might find a cure for my cancer and wake me up. I want to have this chance. This is my wish.”
Following the ruling, in a case described by the judge as exceptional, the body of JS has now been preserved and transported from where she lived in London to the US, where it has been frozen “in perpetuity” by a commercial company at a cost of £37,000.
The girl’s parents are divorced. She had lived with her mother for most of her life and had had no face-to-face contact with her father since 2008. She resisted his attempts to get back in touch when he learnt of her illness in 2015.
The judge, Mr Justice Peter Jackson, ruled that nothing about the case should be reported while she was alive because media coverage would distress her. She was too ill to attend the court hearing but the judge visited her in hospital.
Jackson wrote: “I was moved by the valiant way in which she was facing her predicament. 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. It is an example of the new questions that science poses to the law, perhaps most of all to family law … No other parent has ever been put in [the] position [of JS’s father].”
He added: “A dispute about a parent being able to see his child after death would be momentous enough on its own if the case did not also raise the issue of cryonic preservation.”
Since the first preservation by freezing in the 1960s the process has been performed only a few hundred times. The body has to be prepared shortly after death, ideally within minutes. Arrangements then have to be made for the body to be transported by a registered funeral director.
“The scientific theory underlying cryonics is speculative and controversial, and there is considerable debate about its ethical implications,” Jackson said. “On the other hand, cryopreservation, the preservation of cells and tissues by freezing, is now a well-known process in certain branches of medicine, for example the preservation of sperm and embryos as part of fertility treatment. Cryonics is cryopreservation taken to its extreme.”
The judge said the girl’s family was not well off but that her mother’s parents had raised the money. A voluntary UK group of cryonics enthusiasts, who were not medically trained, had offered to help make arrangements.
Co-operation of a hospital was required. “This situation gives rise to serious legal and ethical issues for the hospital trust,” the judge observed, “which has to act within the law and has duties to its other patients and to its staff.”
The hospital trust in the case was willing to help although it stressed it was not endorsing cryonics. “On the contrary, all the professionals feel deep unease about it,” the judge said.
The Human Tissue Authority (HTA), which regulates organisations which remove, store and use human tissue, had been consulted but said it had no remit to intervene in such a case.
“The HTA would be likely to make representations that activities of the present kind should be brought within the regulatory framework if they showed signs of increasing,” Jackson said.
The HTA said: “We are gathering information about cryo-preservation to determine how widespread it is currently, or could become in the future, and any risks it may pose to the individual, or public confidence more broadly. We are in discussion with key stakeholders … and the possible need for regulatory oversight.”
The government may need to intervene in future, Jackson said: “It may be … events in this case suggest the need for proper regulation of cryonic preservation in this country if it is to happen in future.”
Inquiries made of American authorities revealed that there was no prohibition on human remains being shipped to the US for cryonic preservation, providing certain provisions were made.
During the course of the 14-year-old’s case, the father changed his mind and told the court: “I respect the decisions [my daughter] is making. This is the last and only thing she has asked from me.”
A child cannot make a will and the court had to decide where the girl’s best interests lay. The judge concluded that allowing the mother to make a decision about her daughter would be in her best interests. The girl died peacefully knowing that her body would be frozen, the judge recorded.
The Department of Health said: “Cases such as this are rare. Although there are no current plans for legislative change in this area, this is an area we will continue to keep under review with the Human Tissue Authority.