Abstract: Oncofertility is a field that aims to address fertility preservation in patients undergoing cancer treatment. Cancer treatments have been proven to have various gonadotoxic effects, but there have been subsequent developments in fertility preservation methods that aim to maximize future fertility after the conclusion of treatment. Discussions on oncofertility are approached very differently when the patient is an adult versus when the patient is an adolescent. Adolescent patients present various  barriers, with a primary barrier being the debate on the importance of parental vs.  patient input in making decisions regarding fertility. While the majority opinion on the  matter seems to state that each perspective should be taken into consideration  equally, I believe that the core ethical principles of healthcare (autonomy, beneficence, non-maleficence, and justice) along with broader bioethical frameworks support  giving more weight to the adolescent patient’s own opinions and decisions, centering  their voice as a priority while engaging other parties as collaborative partners within a shared-decision making model.

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Introduction  

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Oncofertility is a growing field encompassing several medical specialties, with a main focus of initiating discussions with patients about potential fertility issues associated with cancer treatments as well as available fertility preservation methods. When it comes to having these discussions with adults, the principles of healthcare are clear that the patient’s autonomy takes precedence in terms of their decisions on treatment plans and potential fertility preservation in the event that the patient is within reproductive age. However, the approach to discussions about such topics with adolescents presents a much less clear direction. In addition, with a multifaceted team consisting of oncologists, obstetricians/gynecologists, pediatricians, the patient and their parents, and several others, varying opinions by different individuals can muddy the water even further. Some argue that the decisions made by both the adolescent and the parent are of equal importance and should therefore be equally taken into  consideration. While there is certainly merit to that statement, in this essay I will present  my argument for why I believe the opinions and decisions of the adolescent patient  should take precedence, as well as for why I believe providers should conduct these  discussions directly with the adolescent, with parents and other parties acting as collaborative, rather than overriding, contributors.

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Gonadotoxicity of cancer treatment and fertility preservation methods  

 

     Gonadotoxicity is a well-understood side effect of both chemotherapy and radiation therapy. There is no established lower limit of dosing below which individuals are considered safe from the risks of infertility with these treatments [1]. For assigned male at birth individuals, there is a sustained risk at all ages; for assigned female at birth individuals, the risks of gonadotoxicity are lowest at a prepubertal stage, with increased risks as they age [1]. Various fertility preservation techniques exist, each with its own list of risks and benefits. For those with ovaries, oocyte and embryo cryopreservation is an option for postpubertal individuals [1]. One drawback of this method is the potential delay in cancer treatment. Ovarian tissue cryopreservation is a current option for prepubertal individuals and for postpubertal people who cannot afford to delay treatment [1]. For those with testicles, sperm cryopreservation is the most established option, with testicular sperm extraction and testicular tissue cryopreservation as additional options [1].

 

What defines an adolescent?  

 

     For the purposes of this essay, I find it pertinent to define those patients that I will be referring to as adolescents for the duration of the paper. The scope of oncofertility discussions and fertility preservation is dependent on the patient’s age and level of maturity and competence. The barriers and ethics of these discussions with adolescents is different in my opinion than those of having these discussions with children. Therefore, for the purposes of this essay, I am defining adolescents as those individuals between the ages of 12-17. The issue of mental and physical maturity and competence comes into question as well. The ethics of these discussions with those deemed incompetent to make medical decisions is also different than those which I hope to discuss in this essay. It can be assumed that the adolescents I am referring to in this paper are medically competent in the sense that they are able to show that they understand relevant information about their medical condition and treatment options, weigh the potential benefits and risks, and make a reasonable choice as such.

 

Ethical frameworks for pediatric decision-making  

 

     There are four core ethical principles associated with being a healthcare provider that were defined by Beauchamp and Childress in 1979: autonomy, beneficence, non maleficence, and justice [2]. Autonomy is defined by the understanding that all individuals have intrinsic and unconditional worth and should be able to make their rational decisions through the concept of self-determination [2]. Beneficence is defined as the obligation of the physician to act for the benefit of the patient [2]. Non-maleficence is defined as the obligation of the physician to not harm the patient [2]. Justice is defined as the fair and equitable treatment of all patients, regardless of background, identity, etc [2]. These four principles make up the core of bioethics, and they are used to both justify and refute topics based on each individual’s interpretations of these principles and how they relate to that specific topic. However, a comprehensive ethical analysis requires engagement with additional frameworks that address the unique complexities of pediatric decision-making. 

     Relational autonomy highlights the social context within which individuals exist. It acknowledges that meaningful autonomy is exercised within relationships instead of individually, emphasizing the importance of allowing the patient to rely on trusted individuals to help make healthcare decisions. In the pediatric setting, this concept recognizes that pediatric decision-making is shaped by relationships with parents, peers, and clinicians, and it argues that respecting the voice of adolescent patients in shared-decision making promotes long-term autonomy. In this framework, it is argued  that individualistic conception of autonomy can deter providers from being able to  guide patients and families together through difficult decisions, while approaching  discussions through relational autonomy allows collaboration between the patient and  those closest to them [3]. 

     The mature minor doctrine is a legal and ethical framework recognizing that a subset of adolescents have adequate maturity and capacity to understand and appreciate risks, benefits, and alternatives of an intervention or procedure. The understanding and implementation of the mature minor doctrine varies by state, and final decisions on adolescent maturity can be determined either by providers or within a judicial system [4]. Related to the mature minor doctrine, I find it necessary to define pediatric assent. While informed consent provides a legally binding agreement and is provided by parents in pediatric settings, assent is the child’s active, voluntary agreement to participate in an intervention or procedure [5]. Pediatric assent has been advocated for as a way to encourage patients to take on greater roles in their health care decisions and fairly include them in decisions that may have a significant impact on their livelihood. Despite not being legally necessary to obtain in order to proceed with said intervention, pediatric assent, especially within adolescent populations, has been described as vital within shared decision-making [5].

     Lastly, I will be discussing this topic within the frameworks of care ethics and virtue ethics. Care ethics focuses on moral reasoning occurring in the context of relationships and being rooted in empathy, compassion, and collaborative decision-making instead of abstract, rule-based principles [6]. Incorporating relational autonomy into this view, care ethics in this context would emphasize the importance of attending to the particular needs and opinions of the patient while aiming to preserve the caring relationships between the patient, their parents, and their clinicians [7]. In a similar vein, virtue ethics calls on providers to navigate complex dynamics of adolescent healthcare discussions by focusing on particular needs and capacities of each individual patient rather than broadly applying rigid rules [8]. It emphasizes compassion, integrity, and justice, accounting for the emotional dimensions of human  interactions within each patient-provider dynamic. 

 

Approaching oncofertility discussions with adolescents  

 

     Several barriers exist in the discussions of oncofertility and fertility preservation with any individual regardless of age. Key areas of contention in these discussions are outlined in several articles. One major obstacle lies in the financial strains of fertility preservations [9, 10, 11, 12]. Several of the methods outlined above are expensive and unavailable to patients who either do not have insurance or those with insurance plans that may not cover these procedures. Additionally, a major barrier preventing physicians from initiating these conversations was their own perceptions that these procedures may be too financially burdensome for their patients, regardless of if they actually knew that to be true for that specific patient [11]. Another major barrier was physicians’ lack of knowledge or education about the topics of oncofertility [10, 11, 12,  13, 14, 15]. Providers do not have the knowledge to educate their patients on aspects  of fertility preservation such as available methods, cost of procedures, facilities to get procedures done, or how to approach these conversations with their patients. Institutional guidelines may also bar providers from having educational and meaningful discussions with their patients. By and far, these barriers exist to get in the way of discussions with patients of all ages.

     Engaging in these discussions with adolescents presents all of these barriers along with an additional one, one that is the focus of my argument in this essay – the concepts of parental vs. patient input when it comes to making these decisions. This barrier to discussions in adolescents has also been well-documented, and a fairly widely-accepted stance on this issue is that both parental and patient input are essential in making decisions regarding fertility preservation, and decisions should not be made without both parties in agreement [9, 10, 13, 15, 16]. Many of these papers argue a point similar to mine – that the opinions, voice, and decisions of the  adolescent must be taken into consideration when discussing fertility preservation  options. Despite this, many of these discussions operate under the principle that the  opinions and decisions of parents are superior by default to those of the still developing adolescent, and therefore present their viewpoints on why those of the  adolescent are of equal importance. Using an ethical framework, I believe that it  should be seen that the adolescent’s perspective should be the center of the  discussion within shared-decision making, ultimately taking more weight than  perspectives of their parents. Let it be known that I understand the legality of these  discussions requires parental consent for medical procedures when it comes to minors of any age. My argument is not to change policy on a global level to allow adolescents to make their own medical decisions without parental consent – rather, I am simply  presenting an argument for why providers should take the opinions of their adolescent  patients with greater seriousness. Subsequently, in the event of conflicting opinions  between patient and parent, this argument will explore why providers should put  greater emphasis on the choices of their adolescent patients.

     Returning to the core ethical principles of healthcare, patient autonomy sticks out as the key principle applying to this argument. I would argue that the majority of people would agree with the idea that, as assumed in this essay, a physically and mentally competent patient should have the power to make their own decisions about their own healthcare. This principle alone highlights the importance of patients feeling in charge of their own healthcare and their own decisions. Research has shown that parents often end up taking a greater level of decision-making involvement than patients desire, leading to discordance during these discussions due to patients desiring a higher level of independence in their healthcare decisions [14]. It can be said as an obvious statement that most of the time, parents have the desire to protect their children as much as possible and believe they are making the best decisions for them at each stage. In addition, some research has shown that some parents do not want to involve their child in the decision-making process at all as an attempt to protect them from such discussions, as well as wanting to focus on treating the cancer first and foremost before deferring to other discussions on other topics they may believe to be of less importance [14]. While this may stem from protectiveness and may be motivated by good intent, this presents a clear breakaway from the principle of  autonomy, as patients should have the right to understand all risks of their treatment,  with gonadotoxicity and fertility preservation being a key topic. Physicians should  exercise the principle of patient autonomy as a reason to initiate these discussions with  patients, and in the event of parental disagreement, sincerely attempt to change the  minds of the parent to highlight the importance of these discussions. Relational  autonomy additionally supports the fact that the adolescent’s autonomy should not be  diminished by the involvement of parental input; rather, they should be given an  opportunity to feel supported by these relationships, discuss as needed with their  trusted company, and ultimately come to their own decisions. While care ethics  focuses more on preserving relationships between patients and parents, this  framework also provides a responsibility for providers to be a facilitator in maintaining a caring relationship between adolescent patients and their parents during these  discussions. When parents resist fertility preservation discussions out of desire to  protect their child, clinicians should recognize this as an expression of care while  advocating for the adolescent’s right to participate. Assuming that most parents have  a strong desire to maintain caring relationships with their children, it can be argued  that allowing their adolescent child to have a more significant role in these discussions  and have their contributions taken more seriously can strengthen the trust within the  relationship. As defined above, the mature minor doctrine provides additional support  for centering the adolescent’s voice within these discussions, particularly when they  demonstrate cognitive maturity similar to that asked of an adult patient providing  informed consent. Within these frameworks, providers may be able to facilitate an  environment of shared decision-making that allows the adolescent patient to have  their voice heard and opinions taken with significant weight. Bringing up the principles of beneficence and non-maleficence, physicians and  providers should always attempt to do what is best for their patient while also preventing harm. In the context of these discussions, a common topic that is brought up is the topic of delaying treatment in order to begin fertility preservation. Some argue that there needs to be careful balance between how long treatment can be delayed before the patient becomes unsafe from the progression of their cancer [9,17]. Beneficence and non-maleficence play into these discussions because providers  want to make sure they are making the best possible decisions for their patients. There  exists a careful balance in making these decisions – providers must decide if the  disease process is at an early-enough stage where treatment can be delayed with no  real harm done to the patient in order to preserve their ability to have future children.  On the opposite side, if a provider believes that treatment cannot be reasonably  delayed, they run the risk of encountering a situation where gonadotoxicity leaves an  individual infertile despite the patient wanting to one day have children of their own. In  adolescents, these principles apply just as seriously, as being in a postpubertal stage,  some adolescents begin thinking about the possibilities of children in their future.  Therefore, these discussions apply equally in this age group. If there are some parents who deny wanting providers to have these discussions with their children, providers  should attempt to convince the parents that presenting these options to the patient is  the right thing to do [18]. Importantly, it should be stated that treatment delays for  fertility preservation in adolescent patients is a legitimate concern and does represent  a situation in which parental dissent may be ethically justified. Beneficence and non maleficence require providers to weigh the risks of treatment delay against the long term consequences of infertility on an individual basis. However, it is equally important  to recognize that failing to discuss fertility preservation options can itself act as a form  of harm. If the provider believes that treatment can be reasonably delayed, and the  adolescent patient expresses a desire to pursue fertility preservation, beneficence and  non-maleficence support presenting all of the possible options to the patient while  explaining the clear risks and benefits of each option. Should the patient make a  decision that the physician believes is not best for their future livelihood or would actively cause them harm, the provider’s job is to take their viewpoints into  consideration while then subsequently explaining their opinions and reasoning for  their own recommendations. Virtue ethics can be applied to support this view by  stating that providers should not simply apply rigid rules about whether treatment  delay is acceptable; rather, attending to specific clinical circumstances, patient desires,  and the emotional context of the decision all play a factor in making treatment  decisions on a case-by-case basis. Beneficence further applies to these discussions  and to the notion that the opinions of the patient should take precedence – if  physicians truly want to do best by their patients, that surely includes figuring out what  the patient wants to do and what they believe to be best for their own future. These  discussions should happen in group settings, with the main focus being on the  contributions of the patient. 

     The principle of justice applies in these settings as well. Justice is defined by the fair and equitable treatment of all patients, which can be applied in this context to say that adolescents deserve just as much attention to their concerns and opinions as any  other patient. Given that no other party in these discussions is in the position of the  patient, the principle of justice can be applied specifically to the adolescent. Physicians therefore have a responsibility to listen specifically to the patient and treat their concerns, opinions, and decisions with the most amount of merit and attention. Justice also dictates that there should exist a uniform set of guidelines and policies for adolescent oncofertility discussions to ensure that this patient population is given the same amount of attention and decision-making capacity as any other age group [13]. 

     Lastly, I find it pertinent to distinguish between the ethical argument presented in this essay and the practical realities of actually implementing these concepts. As stated above, the purpose of this essay is not to advocate for policy change to allow adolescents to make their own decisions without parental consent. Within existing legal frameworks, however, I believe I have provided methods for clinicians to center adolescent preferences in these discussions. Holding discussions directly with the patient, assessing their decision-making capacity and ability to provide assent, engaging in facilitated conversation with patient and parent when there is disagreement, and documenting the patient’s preferred decision regardless of outcome are all ways to center the adolescent patient and encourage them to take control of their own healthcare decisions.

 

Engaging with counterarguments  

 

     A potential counterargument to centering adolescent preferences may be that individuals are known to develop full executive function and decision-making capacity in their 20s, and therefore their decisions should not be taken as seriously while they are teenagers. I understand this to be a biological truth that does deserve careful discussion. Neuroscience research has indicated that the prefrontal cortex continues development well into the 20s. Additionally, research has shown adolescence to be an era of heightened risk-taking and rash decision-making [19]. However, I offer my own rebuttal to these points. Additional research has shown that adolescents without developmental delays who are 14 years old and older tend to have similar decision making capacity as adults when given time to reflect [4]. This provides an important distinction. While adolescents may make worse decisions under stress, impulsivity, and peer pressure, giving them adequate reflection time and support within a structured clinical setting allows them to approximate the decision-making skills of adults. Personal experience with chronic or life-threatening illness may also provide younger  patients with greater maturity and insight [20]. It is also worth noting that the age to be considered a legal adult with full autonomy is 18 – is this not still below the age of a fully developed prefrontal cortex? Does it stand to reason that a physician should take the opinions of a 17-year-old less seriously than that of an 18-year-old simply because the latter is considered to be an adult, despite there only being a one-year difference? Who’s to say the discussion stops there – some studies indicate that the development of the prefrontal cortex continues potentially up until age 30 for some individuals. And yet, despite this, all individuals are given full autonomy at the age of 18, despite not having fully developed executive function, which is where I find the fallacy in this counterpoint. The practical implication here is not that adolescent neurodevelopment is unimportant and should not be taken in consideration at all; rather it calls for structured clinical support and for clinicians to allow patients to reflect on their conditions adequately, offer information in developmentally appropriate ways, and  ensure that decisions are not made under stress.  

     An additional counterargument is in the context of parental authority. Parental authority is not merely a legal construct and is often justified through beneficence and substituted judgment. Returning to care ethics, it can be assumed that parents have an ultimate goal of maintaining a caring relationship with their child while also attempting to make decisions based on what they see to be the superior choice. Certain situations do carry an ethical justification for parental concerns; to name a few, when fertility preservation may introduce significant treatment delays in aggressive malignancies, when the procedures themselves carry meaningful medical risks, and when the adolescent’s preferences appear to be driven by acute emotional distress rather than reflective deliberation. It is absolutely important to address these concerns with parents and take each situation in a case-by-case basis. In these situations, when conflicts arise between adolescent and parental preferences, it is the provider’s responsibility to facilitate conversation, provide information, and work towards a consensus between the two parties rather than completely deferring to one or the other. 

 

Limitations  

 

     This paper demonstrably has several limitations. For one, I have focused my discussion on adolescents specifically and did not delve into the ethics of holding these conversations and discussions with children younger than 12. This is a separate topic that has several of its own limitations and ethical barriers that are absolutely worth discussing. Secondly, I did not discuss the ethics of these conversations with those adolescents not deemed medically competent. This constitutes another patient population for which there is merit in debating the weight of the patient’s own opinions and decisions in their treatment plans and fertility preservation. Thirdly, I did not include every single article out there that discusses oncofertility discussions with adolescents. This is thankfully a topic that has been well-researched and continues to be well-researched despite there still existing gaps in certain areas. I included several articles that I believe helped contribute certain points to this paper, but it can be said that there are likely several other articles that discuss these topics as well, and therefore there are likely several gaps in some of the topics I discussed. Parental consent remains a necessary step in the treatment plans and discussions had with their children. As I stated above, this paper is not an attempt to change laws at a policy level to disavow parents of all consent-making power, as I understand the importance of this step in making decisions for minors. I simply believe the existing ethical frameworks set a standard for why the opinions and decisions of the patient should be centered in treatment discussions and taken with greater weight than those of others.