Fertility preservation for children treated for cancer (2): ethics of consent for gamete storage and experimentation

Infertility causes significant psychosocial morbidity by reducing both personal sense of wellbeing (health) and capacity to exercise self determination over reproduction (autonomy).1As the primary moral responsibilities of health professionals are restoration of health and respecting patients' autonomy, it follows that preserving fertility or treating infertility has sound ethical justification in adults. These arguments also apply to children. Children who develop cancer suffer misfortune; for this to be compounded by the burden of potentially treatable infertility seems doubly unjust. However, intervention to preserve fertility must have a sound evidence base as well as moral provenance. It should neither raise unrealistic expectations nor have long term adverse effects on the patient or their offspring. Preservation of fertility by assisted reproductive techniques (ART) is not an established part of cancer treatment for prepubescent children and without relevant research to determine its efficacy and safety it cannot be considered as such. Clinical research in adults is ethical if it is: (1) scientifically valid; (2) in the patient's best interest; (3) subject to individual ethical review; and (4) subject to informed consent.2 Similar conditions apply to research in children with the additional proviso that alternatives are sought—such as animal models—before involving children.3 Physicians should have the necessary expertise and facilities to carry out the research.2 Surgical removal of gonadal tissue is of greater than negligible risk and minimal burden, so is justified only when combined with treatment intended to benefit the child concerned.3 As the benefit of storing gametes can be realised only in the future, it is important that removal of gonadal tissue is considered as part of an ongoing process rather than a discrete event. Although harvesting gonadal tissue may be of high risk if taken in isolation, within the context of the child's illness it may …