Human Tissue Donation: Capacity, Competence and Protection
In the recent case of NHS Foundation Trust v MC  EWCOP 33 Mr Justice Cohen was tasked with deciding whether it was in MC’s best interests to undergo a procedure to harvest peripheral blood stem cells. It was accepted that treatment had no medical or physical benefit to MC, but the stem cells would be donated to MC’s mother suffering from leukaemia: the donation could significantly improve her mother’s prospects of recovery.
The court was told by leading counsel (both Katie Gollop QC and Bridget Dolan QC) that this was the first time the question of extraction of bone marrow or stem cell donation by someone lacking capacity has come before the Court of Protection, and the first time the Human Tissue Authority (“HTA”) has been involved in a case of this nature. The case is therefore of some significance. There are, however, pre-MCA authorities which deal with the issue.
The case concerned MC, an 18 year old young woman who lives with her parents and two younger siblings. The judge found that MC lacked capacity to make the decision in question. The judge said that there was a close and loving relationship within the family.
Beyond that snippet, the factual detail is scant. The judge did not set out what MC’s difficulties were which led her to lack capacity to make the decision whether or not to donate the stem cells.
The judge adopted a balancing exercise weighing up the pros and cons of each of the options and came down firmly in conclusion that it was in MC’s best interests to donate the stem cells to her mother.
The judge reminded himself that “interests” is not confined to self-interests. In a case such as this the interests in altruism, MC assisting her mother, and the emotional, social and psychological benefits of having her mother around are plainly relevant.
The judge conducted a balancing exercise and whilst acknowledging that the proposed treatment was invasive and not entirely without risks, the benefit to MC of having her mother far outweighed the negatives to the treatment. The judge therefore made the order.
MC in this case was 18, and so an adult subject to the MCA.
Interestingly, a point was raised by the Official Solicitor that there are up approximately 65 cases per year where the Human Tissue Authority (“HTA”) gives approval for these types of procedure on children. The Official Solicitor was concerned that whilst there is a process for best interest determinations of those adults without capacity such as the present, the children who fall outside of the MCA do not have similar protection.
The starting point is the protection given by the legislation. The Human Tissue Act 2004 and its supporting Regulations provide that the donation cannot take place unless by a child or person who lacks capacity unless it is approved by the HTA. The HTA cannot approve unless: (a) no reward has been or it to be given; and (b) it is lawful (ie someone consents or there is authorise lawful authority).
The Official Solicitor pointed out that nowhere within the process is the donor’s interests paramount: to the Trust it is the donee to whom they owe their duty; the HTA checks only to ensure there is no monetary payment or coercion in the donation. It appears from the case that the assessor from the HTA prepares a report and one of the sections of that report includes a passage headed “best interests” but that is only cursory.
The Official Solicitor described this as a vacuum. The judge thought that the vacuum was ‘partially but not completely’ filled. It is not entirely apparent from the judgment what he felt filled the vacuum, but it may be that the judge considered that the best interest assessment section within the report met those needs. He gave guidance that there should be a “considered” risk and benefit analysis by the HTA assessor: by that I take that he means something more than the cursory evaluation in the present case.
Where a child is over the age of 16, she can lawfully consent to medical treatment in the same way as an adult (s.8 Family Law Reform Act 1996). If she lacked capacity to do so, she would also have the protection of the MCA which applies to those who have attained the age of 16, and so best interest decisions can be made in the Court of Protection.
Where a child is under the age of 16, she can lawfully consent to medical treatment if she is competent to do so (“Gillick-competent”). A child is Gillick-competent if she “has sufficient understanding and intelligence to enable him or her to understand fully what is proposed” (Gillick v West Norfolk and Wisbech Area Health Authority  AC 112). The law therefore recognises that if she is Gillick-competent, she could lawfully consent to the procedure and donation of the stem cells. This is also recognised by the HTA Code of Practice.
What if she is Gillick-competent but refuses? There is currently a tension in the law in relation to this, which requires a much more comprehensive exploration than is suitable for this piece. Put shortly, the Court of Appeal in Re W (Medical Treatment: Court’s Jurisdiction)  Fam 64 concluded that even where a Gillick-competent child refuses medical treatment, a person holding parental responsibility could nonetheless consent on his behalf. It is hard to see this view standing up to scrutiny if it were challenged now: particularly in light of the Human Rights Act 1998, and the decision of the Supreme Court in Re D  UKSC 42 (which seems to be contrary in principle to the proposition; and given Baroness Hale’s comments that “whether the consent of a parent remains effective even if a child, with capacity, has refused consent is a more controversial question (which fortunately does not arise in this case)”.
Whether or not a person lawfully could take stem cells against a Gillick-competent child’s wishes, it is clear that any such decision should be taken by a court and not by clinicians. This is also reflected in the HTA Code of Practice.
Finally, for those children who are not Gillick-competent, it is likely that it would be a proper exercise of parental responsibility to choose whether or not to give that consent. Where there is a dispute, tan application should be made to the Family Courts to make that determination.
The Official Solicitor’s skepticism may be well founded in practice. There is, however, a layer of legal protection given by the fact that there has to be some scrutiny and authorisation by the HTA before such a procedure could conceivably take place: as Cohen J says it can only be right that that requires a proper assessment of the benefits and detriments to the donor as well as the donee. Where there is doubt, that should properly be explored by a court who can make a determination with the donor’s welfare at the centre of its decision.
It seems to me that the reality is likely to be that there will rarely be circumstances where it would not be in a child or incapacitious adult’s best interests to undergo a procedure that could save a close family member. The benefits are likely to outweigh the minor risks and discomfort afforded by the procedure. Nevertheless, there are legal safeguards in place and when in doubt, that doubt should be resolved by application to the court.