There is general consensus that patients have a right to know about their health status, the available diagnostic and treatment options, and their associated risks and probable benefits and to choose freely among the options, including declining treatment [1]. Informed consent is the interactive process by which physicians and patients communicate about a given clinical situation and treatment options, concluding with the patient providing treatment authorization or declining treatment. When the patient in question is a child or adolescent, a complicating factor can be uncertainly about decisional capacity. The ability to consent to or refuse treatment is based on the presumption of capacity, which refers to the cognitive and developmental ability to (1) understand treatment information, (2) appreciate the situation and likely consequences, (3) weigh treatment options, and (4) reach a decision [2, 3]. Among adults, capacity is assumed, unless through disability or disease, their decision-making ability is compromised. Children and adolescents, on the other hand, are presumed to lack capacity. Moreover, young people under the age of 18 are not considered legally able to give valid consent to medical treatment in the United States, with the exception of categorical issues such as birth control, abortion, and drug treatment and only on a state-by-state basis. In cases involving minors, parents can give proxy consent to medical procedures which are considered to be “in the best interests” of their child.

Despite this legal standard, the American Academy of Pediatrics has long maintained that children and adolescents should be involved in a process of assent to treatment “to the extent of their capacity” [1]. In their seminal study, Weithorn and Campbell [4] compared decision-making capacity among four age groups (9, 14, 18, 21 years) on outcome measures specifically designed to reflect the four legal standards of competency. At age 9, youth were less competent than adults in terms of ability to reason about and understand treatment options. However, these youth did not differ from adults in expressing a reasonable preference regarding treatment. By age 14, youth demonstrated the same level of competency as the two adult groups across the four competencies. Authors concluded that children as young as 9 years old appear able to participate meaningfully in personal healthcare decision-making.

Assent is a means of involving minors in treatment decisions. Like informed consent, assent is an interactive process, occurring between a minor and a physician, and involves developmentally appropriate disclosure of the minor’s clinical situation and an assessment of the minor’s willingness and preferences regarding treatment [1]. The commonly accepted definition of assent is as a minor’s agreement to participate in a given treatment. Assent sets a lower standard of capacity than informed consent in that it does not require the depth of understanding or reasoning required to meet the informed consent standard [5]. Within the medical decisional capacity literature, there is consensus that all children and adolescents should be involved in discussions and decisions regarding their healthcare, appropriate to their understanding and maturity [6], and that as treatment decisions become increasingly subjective, youth should be afforded the opportunity for greater involvement [7].

Navigating consent and assent procedures for fertility preservation treatments in pediatric populations is very complex and generally viewed as a multistep process. The first part of the consent/assent process involves introducing the possibility of fertility preservation through gonadal harvesting and storage, which would occur at the time of cancer diagnosis. At this stage, the focus is on whether the proposed procedures to preserve fertility in children and adolescents serves their best interests [8]. The second part of the consent process focuses on the disposition of the stored tissue, which is reserved for youth once they reach the age of majority. The focus at this stage is the desires of the now-grown youth to make their own decisions regarding reproduction [8].

Ideally, the decision to pursue fertility-preserving treatments would involve joint decision-making between parents and age-appropriate youth. During the consent/assent process, the procedure for procuring gonadal tissue, experimental nature of procedures, and the relevant physical and psychological risks should be discussed. If both parents and youth capable of giving assent agree to pursue fertility-preserving treatments, then treatment can be provided. Where issues arise is when there is disagreement between parents and youth. Because ovarian and testicular tissue cryopreservation in children is considered experimental, it is subject to federal regulations requiring parental consent for minors. Without parental consent, participation is not possible, even when a minor has the capacity to understand consequences of participation. On the other hand, parents may desire fertility-preserving treatments for their child in the context of their child’s dissent. In this case, according to medical guidelines, if a minor is judged to have capacity, she or he is entitled to the same degree of autonomy as an adult patient [1]. Thus, the competent minor’s decision should be binding [1]. In the case of immature minors with developing capacity or capacity to provide assent, disagreements between parents and youth should be mediated through consultation [1].

When adults with decision-making capacity temporarily or permanently lose capacity, the healthcare proxy is supposed to rely on the substituted judgment standard, which means using the values of patient to determine what she would want if she had the capacity to make her own decisions. Because children, especially young children, may not have developed a robust value system, it is difficult and sometimes not possible to use the substituted judgment standard for them. Instead, parents/guardians and healthcare providers should use the best interest standard, which requires acting in the best interest of the child rather than looking at the value system of the child or the child’s parents/guardians. Is pursuing fertility preservation in the best interest of a child with pediatric cancer?

Some ethicists argue that since children are not able to make certain decisions for themselves now, their parents/guardians should have an ethical responsibility to ensure that certain rights are protected so they can autonomously make their own decisions when they reach adulthood. Joel Feinberg refers to these as “rights-in-trust” [13] that will protect the child’s right to an open future. Some have claimed that fertility preservation is a right in trust that allows children an open future, one that includes the possible genetic reproduction [15, 25]. Fertility preservation enhances children’s future (adult) autonomy by providing them with the option of genetic reproduction, which may have been otherwise eliminated due to cancer treatment. Genetic parenthood is an important goal for many young cancer survivors [29], which is why it is especially important to preserve it.

In addition to promoting autonomy, fertility preservation for pediatric cancer patients also can prevent harm (the ethical principle of nonmaleficence). Adolescent cancer patients have reported that their fertility is connected to their sense of identity and lack of control over it causes distress [11]. Indeed, infertility can significantly affect mental health and this is particularly the case for women. Women experiencing infertility are twice as likely to be depressed as fertile women, and many of them report levels of psychological distress comparable to women with life-threatening conditions [32]. Some adult cancer survivors view fertility preservation as a symbol of optimism and source of “frozen hope” that contributes to their wellness and survivorship [20, 26, 30]. Fertility preservation in the pediatric population may function similarly: providing hope, easing anxiety regarding fertility, and upholding reproductive autonomy [8].

Some who may think fertility preservation is in the best interests of pediatric cancer patients may believe that not choosing fertility preservation is therefore necessarily unethical. McDougall, for example, argues that we should shift our framework from offering fertility preservation to pediatric and adolescent patients to making fertility preservation a rebuttable presumption based on the aforementioned benefits of fertility preservation [23]. Given that fertility preservation can augment future reproductive autonomy, one could argue that not pursuing fertility preservation is not only unethical but also equivalent to sterilization. A response to this claim is that not choosing fertility preservation should not be conflated with sterilization since the intentions behind these two actions are different and the former is an act of commission and the latter an act of commission. Furthermore, it is important to incorporate the medical facts here: fertility preservation, especially for experimental procedures, is not a guarantee of future genetic reproduction, and some cancer survivors who do not undergo fertility preservation are still able to genetically reproduce. Since fertility preservation does not assure genetic reproduction and it can carry medical risks, it may not make sense for all pediatric patients, especially if the patient is already very ill and there is no time to delay cancer treatment or if the fertility preservation procedure increases the risk of cancer spreading or recurring. In short, parents/guardians may have good reasons for choosing not to pursue fertility preservation for their children, and these decisions can be based on the best interest standard. McDougall recognizes that in some cases the potential harms of fertility preservation outweigh its benefits, but asserts that it should be the default option for postpubertal pediatric cancer patients who can safely use established methods [23].