Background to the Case
A case was brought to the family court involving a child with terminal cancer, who wanted to have their body cryo-preserved upon death. You can read an anonymised version of the judgement on the Government's Judiciary website here.
It is important to note that reporting restrictions were placed on this case by the court:
- A blanket ban on any reporting about the case for one month from the minor’s death.
- Thereafter, no information to be disclosed which could lead to the identification of the child.
This does not restrict publication or information or discussion about the treatment of patients with similar wishes, so long as publication is not likely to lead to the identification of the child, their parents, or any organisation or individual involved in the case.
HTA’s Involvement in this Case
This case was brought to HTA’s attention by Cafcass, a body that represents children in family court cases, as it was the first one of its kind to have come before the court in England.
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. Examples are:
- using a body for anatomical examination;
- removing tissue from the body of a deceased person during a post mortem examination to find out more about the illness from which the person died;
- displaying a body in public;
- using organs for transplantation; and
- storing tissue samples for use in medical research.
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.
As the specialist regulator for the removal, storage and use of human tissue, the HTA is sometimes asked to provide information on areas where we have no regulatory remit under the Act, but our knowledge is relevant.
We work with a range of organisations and seek to ensure that any activities involving human tissue, whether covered by the Act or not, maintain the anonymity, privacy, and dignity of the deceased, and that appropriate consent is in place.
Our draft Code of Practice A provides more detail on the principles on which we base our approach and provides a useful starting point for all those working with human tissue.