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Orders made to secure 14 year old's wish to be cryo-preserved upon death

Court was not approving or encouraging cryonics: Peter Jackson J

Mr Justice Peter Jackson has granted an application by a 14-year old girl suffering from a rare form of terminal cancer for orders to secure her wish to be cryo-preserved upon death.

The girl, referred to as JS in the anonymised judgment, had told the court by letter:

"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 want to live and live longer and I think that in the future they may find a cure for my cancer and wake me up. I want to have this chance. This is my wish."

JS died on 17 October 2016 in the knowledge that her body would be preserved in the way she wished.  The judgment in Re JS (Disposal of Body) [2016] EWHC 2859 (Fam) was subject to a restriction that it should not be published until a month after her death.

JS's parents are divorced. For most of her life she had lived with her mother and had had no face-to-face contact with her father since 2008. The relationship between the parents was described by the judge as 'very bad'. Late last year, the father, who himself has cancer, became aware of JS's condition. He brought proceedings to be allowed to see her, but in December 2015 these ended with an order that he should have written contact only.

JS's mother supported her daughter in her wish to have her body cro-preserved. Her father initially objected to JS's application, then later agreed to it subject to certain conditions, including that he and other members of his family could view her body after death. That condition was objectionable to JS.

In his judgment Peter Jackson J emphasised that the duty of the court was not to decide or approve what should happen after JS's death, but to select 'the person best placed to make those decisions'. He said that the court was not approving or encouraging cryonics, still less ordering that JS's body should be cryonically preserved.

He said:

"All this case is about is providing a means by which the uncertainty about what can happen during JS's lifetime and after her death can be resolved so far as possible. JS cannot expect automatic acceptance of her wishes, but she is entitled to know whether or not they can be acted upon by those who will be responsible for her estate after her death. It would be unacceptable in principle for the law to withhold its answer until after she had died. Also, as a matter of practicality, argument about the preservation issue cannot be delayed until after death as the process has to be started immediately if it is to happen at all.

"Having considered all the arguments, my conclusion is that the court can and should do what it can to provide a means of resolving the dispute between JS's parents that hangs over the arrangements that are to be made after her death."

As to the father's wish to view JS's body after death, the judge noted:

"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. An order placing the arrangements after JS's death in the hands of her mother will inevitably exclude the father, including by depriving him of the ability to view the body. That is a serious conclusion, but it is justified on the exceptional facts. The intensity of the difficulties between JS and her mother on the one hand and the father and his family on the other makes it impossible to accommodate the father's wishes."

Orders were made permitting the mother to continue to make arrangements during JS's lifetime for the preservation of her body after death and preventing the father from intervening. The father had given an assurance that he would not try to see JS during her lifetime against her will so that no order in that respect was necessary.

In a postcript to the judgment Peter Jackson J referred to the Trust's 'very real misgivings' about what occurred on the day of JS's death. The Trust was concerned that on JS's last day, her mother was said to have been preoccupied with the post-mortem arrangements and that the process by which the preparation of JS's body for cryogenic preservation was completed by a voluntary organisation caused real concern to the medical and mortuary staff.

JS's legal representatives – Frances Judd QC and Dr Rob George of Harcourt Chambers, and Zoë  Fleetwood of Dawson Cornwell Solicitors – said:  

"[JS] was a bright, intelligent young person, who was able to articulate strongly held views. She pursued her investigation into cryo-preservation with determination.

"It was a privilege to represent this young person and together with the court, the hospital trust and other organisations, achieve an outcome for her which gave her great comfort in the last days of her life."

The Human Tissue Authority commented:

"This case was brought to HTA's attention by Cafcass. We provided advice on whether the use of a body in this way (cryopreservation) was covered by the Human Tissue Act 2004 (the Act).

"The Act makes it a legal requirement that some activities involving bodies or human tissue can only be done if consent is in place. ...

"The Act introduced a system of licensing and gave powers of inspection to the HTA.

"Cryopreservation of a body, and the storage of a cryopreserved body, are not covered by the Act, and we advised the court accordingly.

"As a result of this case being brought to our attention, we are gathering information about cryopreservation 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 on the approach to be taken to cryopreservation in future, and the possible need for regulatory oversight."