A YOUNG girl is afflicted with a life-threatening leukaemia that has not responded to treatment. Her best chance of a cure is with a bone marrow transplant, and her 6-year-old sister is the best-matched candidate for the donor role. Her parents are keen, but the potential donor is frightened, unsure and possibly uncomprehending of what’s being asked of her. What happens next?
“It’s an incredibly murky area, there’s no doubt,” says Dr Melissa Gabriel, who is Head of Transplant at Westmead’s Cancer Centre for Children in western Sydney. “It’s difficult for the parents to be objective about the donor sibling when their other child has a life-threatening illness, and it’s just as difficult for the doctors looking after the sick child to make an objective decision about a donor.”
The legal and ethical challenges that such a scenario poses are outlined in a new article on children and haematopoietic stem cell donors, published in the MJA and authored by Dr Shih-Ning Then of the Queensland University of Technology (QUT) and colleagues.
One of the key ethical problems is that children, who cannot legally consent, are being asked to submit to a procedure that offers them no physical benefit, and which may carry some physical or psychological risks.
Bone marrow harvest is a relatively safe procedure, but there are risks of post-operative morbidity which include nerve, bone and tissue injury; pain; anaemia; pulmonary emboli; fatigue and nausea.
The psychological picture is mixed, with some evidence that being a donor can actually be beneficial, enhancing family closeness and feelings of pride at being able to do something to help a brother or sister. But there may be downsides too: donors may be left feeling isolated, abandoned, or responsible if the transplant is not successful.
There is also the question of the maturity of the child donor and whether they are sufficiently competent to understand what is being asked of them. If the child is old enough to understand, then the agreement of the child, along with that of the parents, is a legal requirement under all Australian jurisdictions.
“You may have children who say no, and then you don’t do it. And I don’t think anybody would do it under those circumstances,” says Dr Gabriel. “I’ve only had one child who said no, and the conversation ended there. Fortunately in that case, another donor was available. Part of the consent process is that there is a very clear discussion and understanding with the donor that they can say no. That’s very important.”
It’s when the child is too young to understand what’s going on — and donors can be as young as 6 months old — that things get legally complicated in Australia. In Queensland, New South Wales and Victoria, there are specific provisions in the legislation that provide a mechanism by which a young child can be a donor. This usually requires the parents’ consent and the assessment of doctors that there will be minimal harm to the child, and that the recipient will die or suffer severe harm if the transplant doesn’t happen.
But the other states and territories do not have such a provision, which means that authorisation for a child donor can only legally be done through a court order.
Lead author Dr Shih-Ning Then, who is a senior lecturer at QUT’s Faculty of Law and is a member of a National Health and Medical Research Council working committee on organ and tissue donation, says that there is a need for a national consensus on this issue at the legislative level.
“It’s probably too much to ask that we could get complete uniformity because that’s very difficult to achieve,” she told MJA InSIght in an exclusive podcast. “But the issue of authorisation of younger children needs to be looked at. It’s troubling that we have completely different levels of procedural requirements, depending on which state you’re living in.”
Dr Gabriel says that there is a strict procedure at her unit with regards to potential donors, although not all of it is mandated by law.
“The first thing is that we meet with the donor and parents without the recipient, and just discuss what the procedure actually involves for the donor, in an age-appropriate way. We then ask for assent from the child, with a clear discussion about being able to say no. Then we get an assessment from a clinical psychologist, although this is not mandatory under NSW law, which is more geared towards physical harms. That is followed by an independent assessment from a paediatrician who works at the hospital but not in the oncology unit. The final sign-off is the signing of the consent form by the doctor, parents and independent paediatrician.”
Dr Gabriel says that if the child is too young to understand, the process is similar in NSW, minus the need for assent from the child: the doctors have to show that they have made an assessment that there’s minimal risk to the donor, and the parents must consent.
She says that although she feels the NSW legislation has mostly got it right, there are still improvements that could be made.
“One gap is that there’s nothing clearly defined about follow-up within the law. NSW probably has the clearest legislation but there’s nothing about the psychological assessment and follow-up, although we do that in our unit.”
She also makes the point that laws at a national rather than a state level would be a good idea.
“It would be unusual for us to see a donor from another state under different legislation, but it would certainly make sense in a country with a relatively small population like ours to have nationally consistent laws. The reality is that even with all the right laws in place, this is a very complicated issue and a very hard thing to do.”
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