Guest Post: Rosalind J McDougall, Lynn Gillam, Clare Delany, Yasmin Jayasinghe
Article: Ethics of fertility preservation for prepubertal children: should clinicians offer procedures where efficacy is largely unproven?
Should we offer a procedure with so little evidence?
Isn’t it burdening a sick child without real justification?
But it’s often low risk – if we don’t offer, are we depriving the child of a chance of becoming a genetic parent when they grow up?
These were the kinds of questions that doctors brought to our clinical ethics service. They wanted ethical advice about offering surgical procedures for young children with cancer, aimed at preserving fertility. This is an area of rapidly developing science, but there is currently little evidence that the fertility preservation process works for very young patients.
Cancer treatment can affect fertility, including in paediatric patients. The impact on fertility varies, depending on the specific treatment and the individual patient. For adult and adolescent patients, there are well-established fertility preservation strategies (such as freezing sperm and ova). Many babies have been born following these types of fertility preservation.
The situation is different for patients who have not yet reached puberty. They do not have mature sperm or ova to collect and store. The main strategy available for young children is surgically removing and freezing ovarian or testicular tissue, for later re-implantation. For this age group, there is only very limited evidence that this process can be successful in producing a baby. Essentially, the patient’s tissue would be removed and stored in the expectation that science will continue to progress as he or she grows up. When we first began discussing this issue with clinicians, there was promising research about utilising prepubertal tissue but no live births reported. So the key question was whether a child should be exposed to the risks and burdens of a surgical procedure, for this highly speculative future benefit.
Over several years of discussing this issue with clinicians, we have come to the view that offering fertility preservation procedures for prepubertal patients is sometimes ethically justified. Although the benefit available is small, the degree of burden is also low in many cases.
The procedure is beneficial in the sense that it provides a possible pathway to becoming a genetic parent in the future. The chance may be remote, but it is likely greater than if the procedure was not undertaken. While philosophers question the importance of genetic connection, there is a substantial body of empirical work indicating that fertility is highly valued by many people. So the key benefit of attempting fertility preservation is that it increases the child’s chance of genetic parenthood in the future, which he or she is likely to value.
However, there are many important ethical concerns about potential burdens to the child associated with attempting fertility preservation: burdens at the time of surgery and into the future. These include the surgical risks of the procedure, potentially delaying the child’s cancer treatment, and creating false hope for families. Many of the potential burdens can be minimised with good organisational processes for informed consent and timely surgery. There are additional burdens that may apply to specific patients depending on their medical situation. However, for many children, the burdens of the procedure are low.
Each child’s situation needs to be considered individually. An ethical assessment of the benefits and burdens for that specific child needs to be conducted each time fertility preservation procedures are being considered. We have designed an ethics framework and process to ensure that this type of ethical reflection is now built into the care pathway for each individual child in this situation at our hospital.
Fertility preservation is area of science that continues to evolve quickly. During the writing of our paper, the first birth using prepubertal tissue was reported [www.bbc.com/news/health-38312995]. The ethics framework that we propose for prepubertal fertility preservation will likely continue to develop as research – both scientific and bioethical – progresses.