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Let's Talk about Sex, Baby: Paediatric Oncofertility
Petropanagos, A. (26 May 2016). Let's talk about sex, baby: Paediatric oncofertility. Paper presentation at the Canadian Bioethics Society 2016 Annual Meeting, Toronto, ON.
Oncofertility technologies, such as gonadal tissue cryopreservation, are designed to preserve the future option of genetic reproduction for paediatric cancer patients. The Canadian Paediatric Society recommends that children with partial decision-making skills be recognized as having (some degree) of authority over their own health care. Despite professional medical guidelines stipulating that children be involved in medical decision making to the extent dictated by their capacities, children's involvement in discussions about oncofertility remains controversial because of the sensitive nature of discussions surrounding reproduction and sexual health. Some adults worry that children who are involved in decision making about oncofertility are at risk of being “sexualized” as these discussions necessarily involve information about human reproduction, anatomy, and sexuality (Fallat et al. 2008). Parents and health care providers who worry about this “sexualization” may reject the possibility oncofertility interventions, or exclude children from the decision-making process and thereby fail to acknowledge children’s desires and values. Furthermore, there is disagreement about the degree to which paediatric assent or dissent ought to be respected by parents and health care providers. Social norms about sexuality and reproduction can influence whether oncofertility interventions are offered to paediatric patients (or to their parents) and can also dictate the degree to which children are involved in oncofertility discussions. In this paper, I outline the ethical challenges surrounding decision making about paediatric oncofertility with respect to the relevant questions about the value of genetic reproduction and the appropriate role of minors in reproductive decision making. I employ a feminist analytic approach, informed by relevant empirical research on oncofertility and developmental psychology, as well as philosophical literature on decision making. I offer two ways of interpreting the worry about “sexualizing” children. First, one might believe that child participation in oncofertility discussions will cause children to (inappropriately) view themselves as sexual beings. Second, one might worry that children are harmed because discussions about oncofertility impose a degree of reproductive agency on children. I show that the latter concern is more worrisome than the former, but I argue neither “harm of sexualization” warrants the rejection of oncofertility technologies nor the exclusion of children from the oncofertility decision-making process. Moreover, the so-called harm of sexualization warrants further examination, given the social context of oncofertility decision-making. In addition I use the concern about sexualization to illustrate the limitations of standard bioethical models of medical decision making, which are unable to account for the broader socio-cultural contexts that can unduly influence informed choice about medical interventions. Traditional models of well-being, which equate a child’s best interest with an open (adult) future (Feinberg 1980), are problematic for oncofertility decision-making because they would have us prioritize an individual’s future capacity for genetic reproduction over other relevant and important considerations, such as the child’s current well-being. I maintain that the ethical provision of paediatric oncofertility requires an actionable and empirically grounded theory of childhood well-being that helps to avoid the imposition of premature reproductive agency on young children.
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