© Springer International Publishing Switzerland 2016
Ralf J. Jox, Galia Assadi and Georg Marckmann (eds.)Organ Transplantation in Times of Donor ShortageInternational Library of Ethics, Law, and the New Medicine5910.1007/978-3-319-16441-0_2222. Is an Absolute Prohibition of Living Kidney Donation by Minors Appropriate? A Discussion of the Arguments in Favor and Against
(1)
Centre for Biomedical Ethics and Law, University of Leuven, Leuven, Belgium
(2)
Centre for Nursing Studies and Health Care Research, University of Leuven, Leuven, Belgium
Kristof Thys
holds a master
Fabienne Dobbels
is professor at the Centre for Nursing Studies and Health Care Research of the KU Leuven (Belgium), conducting research on adherence, self-management and patient-reported outcomes in the field of both adult and pediatric organ transplantation. She is a former Director of the International Society for Heart and Lung Transplantation and International Pediatric Transplant Association. She is currently the co-chair of the working group on Psychological Care for Living Donors and Recipients of the European platform on the ethical, legal and psychosocial aspects of transplantation (ELPAT) and a founding member of the European Transplant allied health professionals (ETAHP) working group of the European Society of Organ Transplantation. Being trained as a psychologist, she had more than 15 years of clinical experience in the field of heart transplantation. Her research resulted in more than 130 papers and book chapters on psychosocial issues related to transplantation and numerous lectures at national and international conferences.
Paul Schotsmans
is professor of biomedical ethics at the Centre for Biomedical Ethics and Law (KU Leuven, Belgium). He is honorary president of the European Association of Centres of Medical Ethics (EACME), where he served consecutively as treasurer, secretary-general and president. He is also a board member of the Belgian Advisory Committee on Bioethics. He was board member of the International Association of Bioethics. He is a member of the ethics committee of Eurotransplant. He is also member of several local and international ethics committees. He is also the co-chair of the working group on Pediatric Organ Donation and Transplantation of the European platform on the ethical, legal and psychosocial aspects of transplantation (ELPAT). His research interest is mainly the application of ‘personalism’ as an ethical model for the integration of reproductive technologies, pre-implantation and prenatal diagnosis, clinical genetics, stem cell research, organ transplantation and end-of-life decision-making. He is the author and co-editor of several books in bioethics and papers in leading journals.
Asst. Prof. Pascal Borry
is assistant professor of bioethics at the Centre for Biomedical Ethics and Law (University of Leuven, Belgium). His main research activities are concentrated on the ethical, legal and social implications of genetic and genomics. Pascal Borry is involved in various national and international research projects. He was awarded the prize for biomedical ethics ‘Professor Roger Borghgraef’ (2006), the Innovation Prize of the Dutch Association for Community Genetics and Public Health Genomics (2014) and the Prize of the Dutch Association for Bioethics (2015) He was a visiting scholar at the Case Western Reserve University, the Université de Montréal and McGill University, and the VU Medical Center Amsterdam. He is programme coordinator of the Erasmus Mundus Master of Bioethics. Moreover, he is member of various policy committees such as the Flemish Commission on neonatal screening (2012–2017), the Belgian Consultative Committee on Bioethics (2014–2018) and the Superior Health Council (2014–2020). Within the European Society of Human Genetics he is member of the Public and Professional Policy Committee (2008–2014) and elected member of the Board (2012–2017).
22.1 Introduction
Kidney transplantation is the treatment of choice for many patients suffering from end-stage renal disease and is associated with a lower incidence of morbidity,1 a higher quality of life 2 and favorable cost effectiveness3 as compared to chronic renal dialysis therapy. As a consequence of organ shortage , however, the average waiting time for a deceased donor kidney has steadily increased over the last decade and currently exceeds 1.5 years for children and 3.5 years for adults in the Eurotransplant region.4 In order to reduce long waiting times on the deceased donor list, living donor kidney transplantation has become a well-established practice in many countries.5 Living donor kidney transplantation not only reduces the risk of future morbidity as a consequence of long-term dialysis , but also confers better graft and patient outcomes as compared to deceased donor transplantation. A thorough donor screening process ensures optimal quality of the donor kidney and semi-elective timing of the donation allows for a minimal cold ischemia time. Indeed, increasing the duration of pre-transplant dialysis treatment has been associated with an increased risk of patient death and graft failure.6 Specifically, one study found that patients undergoing pre-emptive kidney transplantation, defined as kidney transplant procedures without preceding dialysis treatment, had a 37 % lower risk of death-censored graft loss compared to kidney transplant patients that received a 6–12 months dialysis treatment prior to transplantation.7
Living donor kidney transplantation, however, is only possible when a suitable living kidney donor is available. Even though for young recipients, parents or other family members often step forward to donate a kidney, it remains unclear whether, and under what conditions, minors should qualify to become a living kidney donor as well. In most countries, minors are legally prohibited from acting as living kidney donors in order to “provide legal certainty and maximize the legal protection of minors”(Lopp 2013). In other countries, such as Sweden, the United Kingdom and the United States, living kidney donation by minors may be legal under well-defined conditions and circumstances. In the United States, for example, 49 minors under the age of 18 donated a kidney between 1988 and 2013 (U.S. Organ Procurement and Transplantation Network 2013). Also in Europe and Canada, cases of living kidney donation by minors were reported.8
In a previous study,9 we found that guidelines and position papers adopt different approaches, and under what conditions, living kidney donation by minors could be appropriate. Most guidelines advocate an absolute prohibition on living kidney donation by minors. These guidelines express concerns about minors’ lack of cognitive and psychosocial maturity to make a decision about the donation; the conflict of interest that parents might experience when making a decision about living kidney donation by one of their children for the benefit of another child; and the medical and psychological harm a minor might be exposed to as a consequence of donation. Finally, the concern exists that minors might be considered as potential living kidney donors, “without there being a desperate medical need or reasonable chance of success”(Thys et al. 2013), given that other treatment options are available, including kidney grafts from deceased donors or living donors that are over 18 as well as dialysis treatment.
Other guidelines, however, would occasionally allow living kidney donation by minors under the provision of adequate safeguards. Four different safeguards were identified in our systematic review . First, the donation should be authorized by a qualified independent body , such as a court or an ethics committee . Second, the minor’s decision-making capacity and autonomy should be independently assessed. Third, the procedure should be deemed consistent with the minor’s best interest . Fourth, living kidney donation by minors should only be allowed as an ultima ratio, when all other opportunities for donation or treatment alternatives have been exhausted.
In the light of these conflicting views, a more scrutinized analysis of the arguments in favor of and against an absolute prohibition of living kidney donation by minors may help us to critically re-evaluate the appropriateness of living kidney donation by minors and to take a more unified approach towards this phenomenon. Therefore, in this chapter, we aim to present the main arguments in favor of and against an absolute prohibition of living kidney donation. These arguments will be presented in three thematic categories, representing the main ethical aspects that have been identified in the previously discussed review.10 These aspects concern the ability of minors to make an informed and deliberate decision about living kidney donation, the assessment of whether acting as a living kidney donor could be in accordance with the best interest of the minor and the appropriateness of parental consent and independent authorization.
22.2 The Decision-making Capacity of Minors
The first aspect concerns the ability of minors to provide informed and free consent to living kidney donation. Opponents of an absolute prohibition of living kidney donation by minors argued that the ability to make an informed and deliberate decision about living kidney donation does not primarily depend on one’s chronological age, but rather on one’s level of maturity and understanding.11 It was argued that decision-making capacity does not suddenly appear at the age of 18, but gradually develops during childhood and adolescence. Therefore, minors may already possess sufficient maturity to understand the nature of the procedure, to weigh the risks and benefits of the procedure, and to make and communicate an autonomous decision. Referring to the Piagetian theory of cognitive development, one study suggested that minors age 13 and older, that are in the formal operations stage of cognitive development, may have similar capacities as adults to provide informed consent.12 Moreover, some commentators remarked that in many countries, minors who can demonstrate sufficient maturity are legally allowed to make their own decisions in many health-related areas, including consent to treatment and participation in research .13 Indeed, a study by Stultiëns et al. concluded that minors are allowed to make legal decisions concerning the provision of their own health care in many European countries, either from a fixed minimal age onwards or based on an ad hoc evaluation of their age and level of maturity.14 Correspondingly, one commentator contended, that “allowing mentally sophisticated minors to consent to organ donation appears to be a logical step” (Zinner 2004). Another commentator stated, that “if the minor is found sufficiently competent, then he should be treated no differently from a competent adult donor”(Broeckx 2013).
However, the idea that minors may be competent enough to consent to living kidney donation was criticized. Critics held that the former position focuses too strongly on minors’ cognitive capacities , disregarding the psychosocial factors that may prevent minors from making a sufficiently deliberate and autonomous decision. A study about the ethical aspects of living liver donation by minors emphasized that the transition period from childhood to adulthood is characterized by several psychosocial developmental challenges that may impact their decision-making capacity .15 These psychosocial factors are at least partly associated with biological developments and brain maturation processes that may continue until one’s mid-twenties.16 They include an increased susceptibility to peer pressure, higher perceptions of invulnerability and a lack of sensitivity to long-term consequences of one’s actions.17 Moreover, it was argued that minors are largely dependent on their parents for financial, emotional and psychosocial support, and therefore might be prone to conscious or unconscious family pressure or coercion.18
22.3 The Best Interest of the Minor
The second aspect concerns whether living kidney donation by minors could still be considered appropriate, if the procedure is deemed compatbile with the minor’s best interests . In this regard, Crouch and Elliott (1999) made a distinction between two types of interests. First, minors have interests in their own physical and psychosocial wellbeing that are referred to as self-regarding interests . Second, minors also have other-regarding interests , which are defined as interests in the wellbeing of other people, “at least partly as an end in itself”(Crouch and Elliott 1999). In the following paragraphs, we will discuss each of these types in turn.
22.3.1 Minors’ Self-Regarding Interests
Opponents of an absolute prohibition have argued that living kidney donation may be in the minor’s best interest provided that there is a beneficial cost-benefit analysis for the potential donor.19 The anticipated benefits that a minor might experience from acting as a living kidney donor are psychosocial in nature and include benefits as a consequence of altruistic behavior, such as increased self-esteem and self-worth, as well as psychosocial benefits because of the improved health status of their sibling and the improved relationship with the recipient.20The anticipated risks may be both medical and psychosocial. Irrespective of the age of the donor, the medical risks of living donor nephrectomy involve a 0.03 % mortality risk, approximately a 10 % risk of perioperative complications and the possibility of long-term complications of living with a solitary kidney.21 Moreover, minors may also suffer psychosocial harm as a consequence of living kidney donation, mainly because the donor’s psychosocial wellbeing is often closely attached to the medical and psychosocial outcomes of the recipient.22 If the anticipated psychosocial benefits that the minor may experience are likely to outweigh the medical and psychosocial risks, the donation could be considered in the minor’s best interest .
By contrast, critics argued that living kidney donation by minors could not be justified by referring to the minor’s self-regarding best interest . First, it was argued that the long-term medical outcomes of living donor nephrectomy in minors have not been adequately observed and studied so far. One study found that the long-term effects of unilateral nephrectomy are not to be neglected, as several patients suffered a decline of renal function 20 years after the procedure.23 Moreover, little is known about the minor donor’s risk of developing a hereditary form of diabetes, in the case that the recipient is diagnosed with diabetes mellitus.24 Second, the long-term psychosocial effects of living kidney donation in minors are currently unknown, as well. It is therefore uncertain whether minors would be able to experience the same type of psychosocial benefits as adults, as they are still in the process of emotional development.25 Moreover, one scholar remarked that the amount of benefits a minor may experience by acting as a living kidney donor has often been overestimated in law cases, while the potential for psychosocial risk has been largely neglected.26