Whether adolescents should be allowed to make their own medical decisions has been a topic of discussion in bioethics for at least two decades now. Are adolescents sufficiently capacitated to make their own medical decisions? Is the mature-minor doctrine, an uncommon legal exception to the rule of parental decision-making authority, something we should expand or eliminate? Bioethicists have dealt with the curious liminality of adolescents—their being neither children nor adults—in a variety of (...) ways. However, recently there has been a trend to rely heavily, and often exclusively, on emerging neuroscientific and psychological data to answer these questions. Using data from magnetic resonance imaging and functional MRI studies on the adolescent brain, authors have argued both that the adolescent brain isn't sufficiently mature to broadly confer capacity on this population and that the adolescent brain is sufficiently mature to assume adolescent capacity. Scholars then accept these data as sufficient for concluding that adolescents should or should not have decision-making authority. Two critical mistakes are being made here. The first is the expectation that neuroscience or psychology is or will be able to answer all our questions about capacity. The second, and more concerning, mistake is the conflation of decision-making capacity with decision-making authority. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 81-85 [Access article in PDF] "What's in the Box Then, Mum?"—Death, Disability, and Dogma Sheila Colman OVERHEARD IN AN EXCHANGE between a bereaved woman and her son outside the church just prior to a funeral service: "What's in the box, then?" "Daddy." The son is in his late 30s and has a learning disability. His mother had prepared him as well (...) as she could; his father had been ill for some time and was not expected to recover. Death, and the rituals surrounding it, had been explained and it was not the first family funeral he had attended.Trying to field such childlike questions is typical of living with a person with a learning disability; trying to find the right words is difficult enough without the added pressure of personal emotional distress.The generally accepted norm in life is that a child is parented within the home until adulthood and then independence is attained. Roles may well be reversed in later life in that the "child" may find responsibilities in caring for, and making decisions for, elderly parents. Few people can stop parenting when their offspring are fledged—even though it is at arms length and any advice may be ignored. Life with a child with a learning disability is unbalanced in this respect; as carers we do not lead lives considered to be normal because our children continue to be childlike for the rest of their, and our, lives. Some of us know that our sons and daughters do not have "apparently limitless potential... to develop skills and autonomy if only they are given the right help" (but try, as a parent or carer, saying that to a professional working in the field of learning disability!) and know that the best we can hope for is mature, rather than immature, dependence.No one tells parents of a learning disabled child—or any other, for that matter—what their responsibilities to that child are. Food, warmth, love, support, and so on are givens, but it takes a conscious effort to move a child toward adulthood when it involves changes in life, for example, moving away from the family home. The debate rages; is it letting go or getting rid of?We all delight in the pleasures our children experience in childhood; we know the magic has gone from the family Christmas once realisation dawns on the youngest child. If you consider that your son or daughter has been dealt a very poor hand in life, the temptation to prolong and promote that innocence is very tempting. It is much easier to prevaricate than to admit that life has its unpleasant sides; that failure and disappointment exist: my son was a great fan of Thomas the Tank engine videos until he was in his early teens, long after it was age appropriate. I passed them onto a younger child, having told him the videos were lost. The fall-out was spectacular [End Page 81] (but fortunately short lived!) and he eventually became very interested in Formula 1 motor racing. I had to push him to grow up.For all of us, the transition from childhood to adulthood is a process, not an event. Although I agree with the professionals that the child with a learning disability should be part of any discussions concerning his or her future, if that child does not have the intellectual capacity to make informed choices, someone else has to do it. That someone else is usually a parent, but is it a parent who is prepared to let go to help that person become an adult with his or her own life away from the family home, or is it a parent who has protected and coddled the child by promising they will never have to go?Lest you think I am a particularly hard, confrontational, and unfeeling mother, I would point out that I have almost 50 years of experience of living with learning disability in the immediate family; my son is 20 but my brother... (shrink)

This chapter contains sections titled: Notes.

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the (...) moral and legal space within which to make decisions that will facilitate their child's long‐term autonomy, not only her present‐day autonomy. Moreover, third‐party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Intersection of Medicine and ReligionJohn C. DormoisThe practice of medicine offers a host of rewards to the practitioner. Besides the obvious intellectual satisfaction of solving a difficult diagnostic problem or the ability to make a comfortable living, I have found the greatest personal sense of moral gratification when helping [End Page 196] families negotiate the most challenging event in life: making decisions at end of (...) life. Whether the condition was a ruptured intracranial aneurysm with brain death or a patient with far advanced cancer struggling with the choice between experimental chemotherapy or choosing comfort therapy at home surrounded by family for the remaining days of life, the moral courage required to provide the best guidance was considerable. In my early years of practice I didn’t call my actions in these situations “courageous” nor were there moral “guidelines” providing a blueprint. I knew I responded with empathy and compassion and that this ability had a lot to do with being raised in a religious or spiritual home. At the same time, I suspected that some of the lack of empathy and compassion I witnessed in some of my colleagues was related to the very training programs of physicians. This essay traces the origin of my moral and ethical concerns about medical education and my intention to reinvigorate the spiritual or existential voice in medicine.An early life experience had a great deal to do with shaping my moral development. At age seven my family traveled through the West Indies. My father’s amateur radio hobby meant that at every stop we would be greeted by one of his radio contacts. One stop in particular was life changing.Port au Prince, Haiti was an unknown place to this seven year–old, but to say it was a culture shock to a boy from Kansas would be an understatement of epic proportions. It was during this visit that I experienced true poverty in its most blatant form. In downtown Port au Prince I saw limbless beggars and the deformed from polio and malnutrition. But it was the sight of the garbage dump near the center of town that changed my world forever. There, among piles of detritus, I saw children and families making their home in the dump. They had hollowed out a sort of cavern in the piles of trash that served as a place of refuge from both the rain and the sun.This experience in many ways has served as a framework and background for my life. Although seen through the eyes of a seven year–old, the picture can only be adequately understood within the context of being raised by religiously faithful parents, parents free of hypocrisy whose lives personified the best in Christian virtues and practices. These early experiences planted the seeds that would only fully blossom some 60 years later.Medical school was a demanding but exhilarating experience. Each day was a day of discovery … anatomy, physiology, pathology … all subjects opening up a whole new world to explore. Internal medicine suited me best since it was the specialty that most closely integrated all the basic sciences necessary to arrive at a diagnosis. I loved the elegance of endocrinology in particular where a given hormone mediator could cause widely different effects if present in excess or completely absent. But I was in the end drawn to cardiology since it combined complex physiology with my avocation, the love of running.There was, however, a disturbing aspect of medicine education that I observed affecting many of my classmates. Although I can vividly recall the enthusiasm that all of us shared as we donned our white coats for the first time and envisioned a future of caring for our patients, things gradually and insidiously changed over the next four years. The altruism and empathy that was so evident in the early years gradually lessened as graduation approached. I could not help being struck by this change and wondered at the time why that should happen. I had no insight then that what I had observed was a well recognized consequence of the medical school experience. I’m sure that the passage from professional training to practice in... (shrink)

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient. Surveys were statistically analysed by comparing physicians’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that (...) for six aspects of information provision examined, parents’ and physicians’ perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient’s age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making. (shrink)

Genetic testing technology has brought the ability to predict the onset of diseases many years before symptoms appear and the use of such predictive testing is now widespread. The medical fraternity has met the application of this practice to children with caution. The justification for their predominantly prohibitive stance has revolved around the lack of a readily identifiable medical benefit in the face of potential psychological harms to the child. We argue that predictive testing can have important psychosocial benefits (...) and that the interests of the child have been construed too narrowly. Proponents of a prohibitive stance also argue that testing in childhood breaches the child's future right to make the same decision as an autonomous adult and to maintain this information as confidential. We argue that predictive genetic testing of children is not necessarily a violation of the child's future autonomy. Indeed, in some cases, such testing may facilitate the development of autonomy in the maturing child. We argue that parents are generally best placed to judge what is in their own child's overall interests, and that a parental request for testing after appropriate genetic counselling should be respected unless there is clear evidence that the child will be harmed in an overall sense as a result of testing. (shrink)

When children are too young to make their ownautonomous decisions, decisions have to be madefor them. In certain contexts we allow parentsand others to make these decisions, and do notinterfere unless the decision clearly violatesthe best interest of the child. In othercontexts we put a priori limits on whatkind of decisions parents can make, and/or whatkinds of considerations they have to take intoaccount. Consent to medical research currentlyfalls into the second group (...) mentioned here. Wewant to consider and ultimately reject one ofthe arguments put forward for putting medicalresearch into the second category. We willargue that some objections to children'sparticipation in research are either based onan implausibly restrictive conception of whatis in fact in the child's best interests orthat there is an implicit and false premisehidden in this argument; i.e., the premise thatour children have so deeply fallen into moralturpitude that we must assume that they wouldnot want to fulfill their moral obligations,or, that they will grow up to be morallydeficient and will then wish not to have actedwell while a child. (shrink)

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (...) (ICUs) (pediatric ICU, pediatric cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be (...) determined in concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child’s future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the ‘deliberative model’ of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers. (shrink)

While there are numerous questions that the having of children raise, there is one that philosophers should be particularly concerned with – “What is the good reason for the having of children?” Recently, Jeff Mitchell has given a deontological answer to this question (Contemporary Philosophy, Vol. XXIV, NO. 5 & 6, Sept/Oct & Nov/Dec 2002, pp. 42-46). His answer is based on the moral function of the having of children. He claims that parenthood is a “moral (...) calling” and that one should heed the call out of a sense of duty and responsibility for the good of society (Mitchell, 44). In this paper, I argue that such a “moral calling” account is mistaken. I maintain that Mitchell’s account is mistaken on two grounds. First, I maintain Mitchell has assumed a problematic stance at the outset and it infects his position in general. That assumption is that we can and should consider the interests of non-existent people when considering the utility of an outcome. By looking at this assumption, we see that the warrant for such a moral reason to have children is lacking, hence, we ought not to appeal to such a reason when deciding whether to have children. The second problem is the failure to provide the epistemic conditions for a central consideration – the warranted belief that one would probably make a good parent. Furthermore, even if we attempt to construct what such conditions might be given other aspects of Mitchell’s account, the conditions fail to provide an adequate justification for the central consideration. Thus, I intend to show that such a moral calling rationale for the having of children is not superior to rationales that focus on the individual’s self-interest. (shrink)

The aim of this article is to generate knowledge about parents’ participation in life-and-death decisions concerning their very premature and/or critically ill infants in hospital neonatal units. The question is: what are parents’ attitudes towards their involvement in such decision making? A descriptive study design using in-depth interviews was chosen. During the period 1997-2000, 20 qualitative interviews with 35 parents of 26 children were carried out. Ten of the infants died; 16 were alive at (...) the time of the interview. The comparative method (grounded theory) was used to analyse the data. The analysis was carried out continuously and in parallel with data collection. Six categories were revealed by the analysis: indecision and uncertainty (ambivalence); information and communication; participate, but do not decide; seeming to be included; the parents’ child; and individual consideration. The findings appear to indicate that parents agree that they should not have the final word in decisions concerning their infants’ future life or death. Such a responsibility would put too heavy a burden on parents who lack the medical knowledge and the professional experience needed to make such a decision, and would be likely to lead to them experiencing strong feelings of guilt. The findings show that parents should be well informed and listened to during the whole decision-making process. Their primary concern was how nurses and physicians communicate with parents who are experiencing a crisis, and how this serious information is presented. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the ‘AP‐physician‐family‐relationship’ and the dominant role Chinese families play in medical decision‐making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese (...) writers from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives ‘weak’ family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re‐interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its ‘parens patriae’ power to defend the defenseless in society and the integrity of the medical profession. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When the Political Becomes Personal:Circumcision as a Cause and as a Parental DecisionJ. Steven SvobodaAs I prepared for the arrival of my first child, a son, a central activity that I previously saw as political suddenly also became very personal. I had founded a non-profit organization in 1997 devoted to educating the world that genital cutting of a child, regardless of a child's gender, is unnecessary and harmful. This (...) includes male circumcision. In 2001, as part of my non-profit work I led a team that went to the United Nations in Geneva and for the first time, put the issue of male circumcision as a human rights violation in the United Nations record. At the time, my then wife was pregnant with our first child, a son. (I had the ultrasound photo of my son-to-be on my nightstand while in Geneva.) Now the circumcision question would be posed to me!A few months after the Geneva trip, when it came time in early 2002 for my son's birth on the US territory of Guam, I naturally was never going to agree to the procedure. Nevertheless, I was trying not to inject my own beliefs into the arrival of my first child. My children's mother, while Jewish, is a pediatrician who always had some doubts about the wisdom of circumcision and easily agreed with my desire to keep our son intact. No one in either of our families had any serious problems with our decision.The nurse at the hospital in Guam where my wife worked and gave birth asked me a total of five separate times if I wanted my son to be circumcised. Each time, I answered, "No," without saying more, until the fifth time, when I politely added, "You do know that there is no medical reason for this to be done, right?" The nurse replied in a chirpy voice, "I know." I then asked, "Why do you ask parents about it then?" She replied, "Because they want it sometimes." Well, the odd thing about that is there is no other medically unnecessary procedure on their children for which parents are repeatedly solicited. And if I had agreed even one time, I am sure that my child would have been circumcised [End Page 73] without any follow-up questions to make sure I really wanted this done. Besides, at least in the absence of any medical condition making it necessary (which is essentially never the case), it should not be my decision to make, nor his mother's, but rather the child's whose body it is.The oddest aspect of this whole chain of events may be that I was not given a single shred of information explaining why I should support my son being cut. My son had zero issues after being left intact, and how could it be otherwise? My advice, naturally, to parents expecting boys (or girls, or intersex children, for that matter) is to educate yourself. You will learn, the more you look into these issues, that there are thousands of people around the world, including countless physicians and other experts, who believe childhood circumcision is as outmoded, useless, and as harmful a practice as footbinding. Why not leave the choice for the child to make about their own body? No asserted medical reason withstands the most minimal scrutiny. And religious claims must stop at the boundaries of another person's body, even if the person is your child. Parents: you have the right to teach your children your beliefs, but your children may not follow your beliefs, and they have the right to make their own decisions, so please consider refraining from marking their bodies with your religion. Two months to the day after his birth, I was holding my son in Washington, DC, having just traveled halfway around the world from Guam. (I was in DC to receive the National Organization of Circumcision Information Resource Center's (NOCIRC) Human Rights Award, which I was presented with for my founding of the non-profit.)My own experience with circumcision strongly influenced my decision. For a decade, I felt that no other single... (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon (...) the notion of capacity is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon (...) the notion of capacity is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the 'AP-physician-family-relationship' and the dominant role Chinese families play in medical decision-making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese (...) writers from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives 'weak' family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re-interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its 'parens patriae' power to defend the defenseless in society and the integrity of the medical profession. (shrink)

Decisions concerning children in the health care setting have engendered significant controversy and sparked ethics policies and statements, legal action, and guidelines regarding who ought to make decisions involving children and how such decisions ought to be made. Traditionally, parents have been the default decision-makers for children not only with regard to health care but with regard to other matters, such as religious practice and education. In recent decades, there has been a (...) steady trend away from the view that parents are in authority over their children and toward the view that children are rights-bearers who should be granted greater authority over themselves. The mature minor doctrine refers to the decision to grant mature minors the authority to make decisions traditionally reserved for their parents. This essay (1) documents the trend towards expanding the understanding of some minors as “mature” and hence as having the right and authority to give informed consent, (2) examines the reasons for which some commentators have a special interest in expanding the mature minor doctrine to the research setting and allowing minors to enroll in research without parental permission, and (3) defends the view that the mature minor doctrine, regardless of its application to clinical health care decisions, ought to be set aside in the research setting in favor of greater parental involvement. (shrink)

Since 2008 I have been closely following the conceptual/performance/video work of Daniel Peltz. Gently rendered through media installation, ethnographic, and performance strategies, Peltz’s work reverently and warmly engages the inner workings of social systems, leaving elegant rips and tears in any given socio/cultural quilt. He engages readymades (of social and media constructions) and uses what are identified as interruptionist/interventionist strategies to disrupt parts of an existing social system, thus allowing for something other to emerge. Like the stereoscope that requires two (...) identical images to create an illusion of a three-dimensional image, Peltz sometimes visualizes two separate elements to create an object or moment that requires space and depth to focus on its varied layers. They say your brain has to process and make meaningful sense out of all that visual information before it can accept the illusion. I say your brain has to do a similar thing when looking and seeing the divine, magical, and faithful (social) art making of Daniel Peltz. Daniel Peltz is Associate Professor of Film/Animation/Video at RISD. He divides his time between Rhode Island and Sweden and is currently at work on an exhibition at Botkyrka Konsthall, Stockholm opening February 2013 and a new project to be included in the IASKA: Spaced Biennial (Australia) in 2014. This interview took place on Skype and is part one of a two-part interview. Feliz Lucia Molina: Are you in Providence, RI? Daniel Peltz: I’m at my house in Providence. I’ve been back for six days teaching winter session at RISD and doing this workshop series—these investors’ drum circles with a group of wealth managers. a client of the firm, 2013, photo Shirin Adhami FLM: The wealth managers were all drumming together? DP: They were all drumming in response to the performance of their retirement portfolios. FLM: Is this part of the “Unrealized Gain/Loss” piece? DP: Yes, it’s part of a show I’m working on in Sweden. I can show you because it was just today. I’ll show you some of this. Lets see—share screen [click, click, click]. This is the room. I’ve been using the camera system that’s already installed in the conference rooms to record them. So the video is being recorded directly by the wealth management office’s tech staff. These are the people I worked with in the last workshop. This conference table is less wondrous. They’ve been learning to drum in response to their retirement portfolios. I started by bringing in my little bit of wealth for them to propose a management strategy, I came to the follow-up meeting with a counter proposal, which was this workshop. So they agreed to do this series of workshops instead of managing my wealth. FLM: Does everybody in the room manage your wealth? That’s kind of a lot of people. DP: That woman in the back there and Craig —they handle new client business. So when you come there with your wealth, they sit down with you and suggest to you how they would manage it. They’re very nice, responsible people. FLM: And where is this? DP: This is in Providence and the one I was showing you is in Waltham, where I was today. Then I’m going to Newport for the last one on Friday. So I will have done four of them. This is the group in Waltham that I just played with today. I played directly with the two groups in Providence and I’m working with an ethnomusicologist at Brown, Asha Tamarisa, who is facilitating the last two. She’s helped develop the workshop in terms of figuring out how to train a group to do this and thinking about the compositional challenges of working in response to retirement portfolio data. FLM: Screensharing helps me to figure out tiny bits here and there about the project. DP: I might even be able to play you a little of the audio I’ve also been working with a group of professional percussionists on what will become a quarterly public investors’ drum circle event. Their stuff was really nice, but I want you to hear what we sounded like in the workshops. They’ve all been recorded by the a/v system in the offices. We use a simple structure where the drummer investors interpret the sensation of gain or loss as embellishments to a base heartbeat rhythm. The group holds the heartbeat and, as each person experiences gain or loss, they embellish that rhythm. "Screensharing helps me to figure out tiny bits here and there about the project" FLM: Is the process all very spontaneous? DP: Its actually quite structured. We produce a custom stock ticker that shows the performance of their collective portfolios. In advance of the workshop each participant submits assets in their retirement portfolio. Then we make a stock ticker that shows the real-time performance of their assets so that they can respond to almost live data. FLM: Are they reading the stock ticker projected up on the screen in the room? Do people drum in correspondence to the visual live data of the performance of their assets? DP: Exactly. They’re looking at the stock ticker as opposed to each other, so it’s a slightly shifted drum circle. They’re looking at the ticker but they’re listening to each other—that’s what we’re practicing. For example, NVO—the price is 172.08 but it’s down -1.16 and as that moves across the screen, the person who’s retirement is invested in that asset starts to embellish when that arrow first appears, based on their experience of loss. They stop when it exits the screen and return to the heartbeat. You could have one ticker for each retirement portfolio, but the way the workshop is constructed is that we just isolate one asset from each person’s portfolio so that everyone in the group is represented in a single ticker. So they’re drumming and looking at the ticker, but they’re hearing each other experience gain and loss. We’ve removed direct visual engagement from the social structure of a drum circle but the oral engagement is still there. FLM: So they had their own sound interpretation of gain and loss? DP: Yeah and that part is quite spontaneous as you were saying. In some of the preparatory exercises we’ve been working to give the participants more strategies for interpreting the sensations of gain and loss. We’re trying to develop their capacity to embellish a heartbeat or base rhythm but I’m not invested in having a melodious result. I’m quite curious about what this kind of structure will result in without any desire for a particular result. FLM: For context, can you talk about the project you did a couple years ago in Bali, “Unrealized Gain/Loss” in relation to this current wealth management project? DP: The workshops I’ve been doing use a similar strategy to the other components in this project. It started in Indonesia on my sabbatical and I was really trying to understand where I was physically and where I was being on sabbatical—this kind of strange jubilee structure where every seventh year you’re supposed to renew your self. And it was around the time of the global financial crisis. I was on sabbatical for the global financial crisis. I remember watching my father, in particular, respond to the financial crisis by monitoring his retirement portfolio and trying to make sense of it. I realized on a visit to their home that he checked his retirement portfolio every single day and I was really struck by that because in some way our parents are mysteries to us as children, especially their moods. We know how important their moods are but we don’t know what governs them. And somehow it was like I’d figured it out, it’s the performance of the DOW! So I think there was something in that. Then I was in Indonesia and I had been drawn there by an interest in their highly ritualized Hindu culture, where so much of life is driven by a ceremonial calendar. I was interested in Bali as this predominantly Hindu pocket within a predominantly Islamic country and life there being organized by this ritual calendar functioning as a kind of resistance to the dominant global religion of free-market capitalism. So I started to explore that correlation between the ways in which this culture that I was living in was sort of “living for the afterlife” and this idea within certain segments of American society of “living for the afterwork life”. The idea that your wellbeing in the “afterwork life” is tied to forces that are unseen and largely beyond your control has strong similarities to many religious understandings of the universe. So I started to explore that and the crafts and materials that were around me were primarily Batik and percussion. Percussion is a huge part of daily life in Bali. These gamelan troupes were everywhere. And I also happened to be there for Nyepi, the day of silence, which is preceded by a very elaborate procession and construction of demonic statues. These were the things that were around me and I started studying Batik with one of the Batik artists there and also started a conversation with two master Batik artists, one who is American and her Indonesian husband. I developed these patterns that were based on symbols from the performance of my retirement portfolio and worked with the batik artists to produce two sarongs. d. peltz - 2012 In producing the designs, I treated the performance of my retirement portfolio since my arrival at RISD [7 years] as a significant interval and then I looked at the ways in which decisions are made within retirement portfolios as having an extension outwards from the individual assets that underlie the retirement portfolio, which are kind of like the base elements of the retirement world. Then there’s the allocation of your assets, which is a global way of understanding an individual according to typologies, which are often referred to in terms of risk—this notion of a ‘risk profile’. What type of ‘person’ you are is determined by your attitude towards risk, or potentiality, and I found that to be a really fascinating way of understanding the universe. I remember looking at the tabs in my retirement portfolio and finding this one for viewing ‘Unrealized Gain/Loss’ and that’s often how I work—is just going through the Cambridge Parking Code, for example, and finding this section of the code that was called ‘Crossing Non-Signalized Locations’ and just feeling “I can’t do any better than that,” you know? That’s what I was talking about in terms of ready-mades that exist in the social sphere. So I found that tab, actually, a long time ago, and I pulled it out of a journal when I was there [in Bali] working on these pieces and I wound up making these two sarongs and later on a series of porcelain vessels for holding one’s unrealized gains and losses. At the time, I knew that I wanted a performance to come out of them, but I wasn’t sure what it was. I was inspired very much by this sort of thing: Pulls out a TIAA-CREF brochure with a man in a suit seated at a table. This guy is probably an actor, and [the brochure] says “TIAA-Cref announces “Individual counseling sessions at the Rhode Island School of Design. Individual counseling sessions at no additional cost to you. You can discuss your personal financial situation with an experienced TIAA consultant on a confidential basis. We are available to help you discuss how to achieve your financial goals by investing in financial solutions such as mutual funds, brokerage, life insurance, and annuities...etc....What retirement benefits best fits your situation?” Often I encounter this and I think O.K., this is one way to prepare for the after-work life and it seems inadequate to me. But, I also find it really inspiring. I really like the visual language of it. I kind of want to be that man. I’d like to see if I could maybe buy his clothes. FLM: What it is about the man on the brochure that interests you? DP: He’s offering personalized objective advice and a detailed evaluation of everything you need to know and do. Who wouldn’t want that? But he’s also something of a contemporary priest or priestess, mediating between the unseen all-powerful universe of global capitalism and the common worker. So I started off developing Unrealized Gain/Loss directly from the charts that represent the performance of my retirement portfolio. Then I came home and I wanted to use those. I had this word in my journal “unrealized gain/loss vessel.” I had this notion of vessels that would contain unrealized gains and losses. That felt really important to me that they would have somewhere to go. I had been thinking a lot about altars and making offerings—that somehow this really fickle, massive, difficult-to-comprehend-universe of the financial world—that somehow it might be nice if you could making an offering to it. [In Bali] they made such beautiful elaborate offerings. So I studied offering making as well with one of the women there and she taught me some of the standard forms created by folding leaves and the significance of the floral arrangements. I started working in clay and then moved to porcelain and I made these unrealized gain/loss vessels. I made a few of them, they have holes on either side that you can’t get your fingers in. But something can go in there and something can go out of there. It’s a nice size for putting on an altar. Then I got this commission from Artists in Context who was interested in my doing something for this project “Artists Perspectives for the Nation” project. I proposed initiating these investors’ drum circles as a new public performance form. I’m interested in bringing together those two symbols—the symbol of the djembe and the drum circle. unrealized gain/loss vessel - d.peltz - 2012 FLM: I can imagine the public digital stock ticker performing like a soft fleeting stream of information, a kind of (meaningless) illusory comfort blanket. DP: In some way you have to understand its relevance outside of the obvious, right? Because the obvious is illogical. Nobody is actually using that data to day trade, for example. People aren’t sitting there with their computers watching the market data in Times Square or setting up an outdoor office and being like “OK it’s up 3 points or it’s up 1.56, trade! Ok now buy, Ok now sell!” That would be a kind of a nice performance, actually. But actual day traders would want more up to date data than that. To understand what that data is doing is really important. And that’s something I’ve realized—that I’m interested in a particular kind of data visualization, which is not about what data can tell people, but what data can tell people who are visualizing it. For example, in the Cambridge Project “Crossing Non-Signalized Locations” I was interested in the 10,000 excuses archive of data recording five years worth of excuses for why people thought they shouldn’t have received their parking ticket. I was not interested in making that excuse wall so that the public could see and understand this data. Inevitably the data will be seen by others but I was really interested in what the action of visualizing the data told those who were visualizing it. The parking attendants themselves were writing those excuses on the wall—I was interested in what that kind action of writing the excuses on the wall told them about the data. Similarly, I’m interested in designing a way to allow people to pass this data from the unseen universe of the market, through their own bodies, which happens through the merging of the drum and the stock ticker. I’m interested in those two also as symbols; the drum as this symbol of the earth, the body and a pagan counterculture, and the stock ticker referring to the ethereal world of global markets—bringing those two together and making them dependent. I’m often drawn to conceptual propositions that I become invested in testing in a sincere way—at first they often they sound humorous to others, but I have to remember that there is humor in them. I don’t sit around and laugh about these things. I stop finding them funny at all. I’m interested in the proposition that we could know something about the after-work life by drumming in response to our retirement portfolio. So then I become really interested in how to craft that into a viable performance form for myself and others. FLM: The aspect of using sound in “Unrealized Gain/Loss” as a way of embodying the information to the asset holder is really intriguing—using sound as a means of embodying the asset data. Was sound a medium that made sense to use immediately or were you considering other means of attempting to embody it? DP: Well I do use other mediums within the project like textile, ceramic, and batik patterns. I was first drawn to the history of Batik patterns as a socio-economic stratification system and the vessels as a way of embodying or manifesting this data of unrealized gain and loss. My first approach was to work with meditation actually—a meditation workshop with my colleagues. I was going to offer this “Unrealized Gain/Loss” workshop where you would explore the sensations of gain and loss by adapting the way yogi-nidra brings you into contact with your physical surroundings and stretches your perception. FLM: At Naropa University there are/were business & compassion workshops—a sort of mash-up of business and compassion and how compassion could be incorporated into a business model. This process and engagement of “embodying data” also has to do with “Participatory Democracy and the Future of Karaoke” you created at the DNC in Denver in 2008. DP: That kind of appropriation and instrumentalization of spiritual practice could be disturbing and thus compelling as a strategy. For various reasons, I’ve come to be drawn to both the form of a quarterly public performance and the established performance form of a drum circle. Its something I’ve seen myself do before, that is to mess up a really good functional social system like a drum circle or karaoke. I remember I was developing language for the karaoke project and started calling it “Participatory Democracy and the Future of Karaoke” and one of my assistants on the project, who’s an incredible artist, said, “but don’t you think the future of karaoke is guitar hero?” and I realized that maybe he thought I was trying to improve the form. I’m just trying to get people to have this shifted embodied experience, I need to craft the performance context so that they can do that. In the case of the karaoke project, for example, what did I need in order to be able to do this [a person to stand up in front of a bar and deliver a karaoke speech]? I realized that the body is very vulnerable so I built a podium so that the speaker can feel secure enough to do this, otherwise you couldn’t get to this state achieved by passing these speeches through the body. Then I was, like, well you need to be able to practice the lyrics because you don’t know all the “songs” by heart, which became an insert to the massive track books carried by most karaoke VJs. And then sometimes the crowd in the bar isn’t there with me, so I needed to extract the voice of the crowd cheering from the original venue and I needed the local audience to cheer if they wanted to. I’m interested in both where the form succeeds and fails. In particular, one of the most interesting things is this auditory gap between the space where you are, the reduced scale of applause in your own little bar, and this grand scale of applause at the convention center where the speech was originally delivered. FLM: How did the concept of “Participatory Democracy Karaoke” come about and why did you use karaoke as a means of engaging what was happening at the DNC in 2008? DP: I was looking at a lot of different readymade media infrastructures within the city at the time. I was interested in the emergency broadcast systems and I developed a proposal to repurpose that system and karaoke became an important symbol because it was this populist form that was already engaged in exploring the sensation of celebrity but also visualizing the gap between ourselves and those with more power and influence. So it had this readymade capacity to play with power and celebrity and I felt like the Obama presidential campaign, the first one in particular, had some very curious overlaps with this culture of celebrity. Obama of course rose to power partly based on his oratory abilities and I was interested in how karaoke as a vehicle was so adept at offering people all that was left of authentic expression in a political speech. Managing a politician and constructing their identity is such a developed practice that it becomes, kind of automatically, a metaphor for the way that our own identities are constructed. Of course the Obama campaign was very hip and savvy and deploying this notion of grassroots. It was really pioneering in its use of social media and this deployment of notions of populism. I was interested at that time in the capacity of karaoke to track speech patterns, precise tempos of anyone’s delivery, and that to me was a way of thinking about what might be left of the authentic self. I was interested in karaoke’s capacity to extract that authentic component and offer it to others. So not just to stand up and be them, but to [literally] pass their speech patterns through your own body. A long time ago, it started to strike me as odd that one would make media at all. It struck me as a kind of un-contemporary way of going about making art in an age of media overflow. That logic extended into my thinking on delivery devices and installation as well. Why would one buy a screen or even set one up when there are so many out there? And the way in which these media displays function in karaoke bars and bars in general is very interesting to me. I’m drawn to this passive consumption of media where your primary social interaction is with the bartender or a few other individuals but these screens are around you and your attention is shifting back and forth between these spaces. So much political rhetoric is spoken to a half-listening audience. I was interested in what was happening in the slippage and that karaoke was a kind of slippage amplifier. So if you put people in a bar and they are delivering a Kucinich speech and Kucinich comes up on a screen then your getting a sound bite of Kucinich and an image of Kucinich and your friend is talking to you— FLM: A kind of magic takes place in that incongruency between sound and image and the karaoke participant who’s relaying the speech-text at the same time. DP: Exactly and there’s some kind of truth in that experience of reality. FLM: Yeah, there’s something uncanny about seeing the body close-up like that as though it can’t lie to you in that moment or context. It’s a weird moment of luminous clarity. The work you’ve done and all of what you’re saying about karaoke is so very interesting to me. Growing up, my dad and uncles sang karaoke a lot (and still do) and being first-generation Filipino American is a different cultural subtext entirely. I’m also seeing it from the position of witnessing family members who are carriers of these stories and songs. And seeing them cherish these Tony Bennett, Frank Sinatra, Elvis Presley songs so much, I also see how their bodies are literal vessels of popular music that signifies something greater—it signifies their cultural and socioeconomic place in the world. The way that they cherish these American 1950s and 1960s pop songs is similar to having a certain kind of reverence for their spiritual faith or Catholicism. It’s a similar kind of care, focus, and attention exerted in karaoke and Catholicism—that these two structures and systems give something to focus on. Setsuko, Seiji and Hitoshi in Obama, Japan as Obama in Indiana — d. peltz — 2008 DP: Sure there something about the relationship we have to our candidate or the way we go about choosing a candidate, which is very similar to a deity or idol. I learned a lot about karaoke culture through this project. I’d never done karaoke. I’d never been interested in it as a form and then I travelled to Japan as part of the project when I made “Setsuko, Seiji and Hitoshi in Obama, Japan as Barack Obama in Indiana” and it was quite fascinating because my image of karaoke had always been this very public forum in a karaoke bar and then I discovered there’s this whole other world of karaoke where people even go on their own, they go and rent a room or cubicle and sing, or they go on a date—just the two of them go and sit in a room and do karaoke together. FLM: I’m interested in issues that take place within or as a result of specific karaoke culture(s). In the Philippines within the last several years there’s been occurring the “My Way Killings” phenomenon. Apparently baklas or gay men are employed by karaoke establishments to help “smooth over conflicts over karaoke singing”—these social forms of conduct, or lack thereof that arise out of the infrastructures of this social sport. In this one rural part of the Philippines there’s a village karaoke machine that the whole village shares—the Aeta indigenous people have an appointed “keeper” of the karaoke machine. I also see karaoke as a proxy to the confessional box in Catholicism where one goes to pour out their sins (minus the penance and redemption). The karaoke machine enables one to literally sing out whatever’s going on internally, but through highly saturated popular song lyrics. While karaoke is a public and social sport, it can also be a private one. Karaoke is a means of communion with each other. DP: Right, this preference for this kind of mediated communication. In Japan I was trying to organize people to work on this project and I was talking about throwing a party and they were like, well, we have to rent a karaoke machine because what else are we going to do? And I think its kind of serving that function of surrogacy—emotional surrogacy. FLM: And karaoke tools can be read as ritual tools—the magic mic that holds everything. There’s got to be some overlap at some point—between religious ceremony and devotion to the karaoke machine. DP: The way I designed the piece was so that it could slip right on top of the ready-made karaoke infrastructure. There was a flat-packed podium and it was made of a single sheet of plywood with no fasteners that slotted into itself. Those were sent out to a network of karaoke bars that I invited to become “karaoke convention centers.” The local VJs downloaded our custom-made, speech-extracted tracks that were designed to play on their existing equipment. In this sense the piece is a permanent installation. If you go to Denver today, some of the VJs still have the tracks in their library of offerings, the Ramones and Romney. It was this notion of re-purposing readymade infrastructure to create a distributable populist form. Obama was coming and the convention was in the Pepsi Center and 30,000 people were coming including 10,000 journalists. The impetus behind the larger art project that commissioned international artists to make works in Denver, was that local people weren’t going to have much access to this convention. It was like an invasion, the city was being descended upon, but if you lived a block away from the site, you had the same access as people in Zimbabwe&mash;30 second media bits excerpted from the speeches. So it seemed to me that the fundamental gesture was how do I take that signal, which was travelling out of the convention center, and create a local interruption? FLM: Is that what you mean by ‘intervention’? The term is frequently used to help describe your work. DP: It depends on the day. Around that karaoke project I had a conversation with Krzysztof Wodiczko and he was proposing that maybe rather than intervention, we should consider the word interruption. Because intervention is kind of an overused term in the field of art and it has militaristic and therapeutic associations outside of the art context. Fundamentally, the idea of intervening speaks to the readymade social world as your primary material. So it’s basically suggesting a kind of subtractive process, which gets back to this question: what is the role of the contemporary media artist in a world that’s so saturated with media? You can’t work additively in a saturated field. If you want to make a visible mark you have to work subtractively. That’s what intervention is about to me, just another way of saying “to work subtractively.” FLM: So the interventions or interruptions aren’t necessarily adding or subtracting, but are they putting orange cones there? What are they doing exactly? DP: I think you’re right about that, they’re not really subtracting. They’re adding to the scope of possibility. I’ve been thinking (with this exhibition I’m mounting next month) about the work as explorations and expansions of social possibility. Maybe it’s more insertion. I started calling the pieces ‘insertions’ that I was making in Rejmyre—a small town in Sweden where I’ve been working for six years now. My favorite site to install there is the tourist bureau. I started calling the video pieces that I made for the tourist bureau, video insertions. This idea that you’re inserting something into the readymade media infrastructure of the world resonates with me. Insertion leverages a context, creating a possibility that the inserted object might be naturalized in the process — that someone can encounter my video in Rejmyre as tourist information. And then all of a sudden tourist information can include some American guy prostrating through town and it can include really bad relationship advice. Maybe insertion is a better word. tourist information – d. peltz 2009-present  . (shrink)

On what basis should we judge whether a parent’s medical decision for their child is morally acceptable? In a recent article, Johan Bester attempts to answer this question by defending a version of the Best Interest Standard for parental decision making. The purpose of this paper is to identify a number of problems faced by Bester’s version of BIS and to suggest ways to redress these problems. Accordingly, we intend to advance the project of formulating a method for (...) guiding parents’ medical decision making for their children. We argue that Bester’s standard fails to accommodate the autonomy of the child and that his criteria for assessing the reasonableness of the parents’ argument for their decision is too weak. We conclude that properly addressing these worries renders his test otiose and that it ought to be replaced with the three commonly held principles of bioethics—the principles of autonomy, beneficence, non-maleficence—and a standard of reasonableness. (shrink)

When mature minors face a decision with important consequences, such as whether to undergo a risky but potentially life-saving medical procedure, who should decide? Relying on liberal political theory’s account of the importance of decisional autonomy for adults, and given the scalar nature of the capacities needed to exercise decisional autonomy, I argue that mature minors with the requisite capacities and commitments have a right to decisional autonomy though they are not yet 18. I argue for this right using (...) a ‘balancing of interest’ account of rights: the interest mature minors have in decisional autonomy outweighs their parents’ interest in shaping their children as a means of ‘creative self-extension’. But I propose two limitations on this right: requests for waivers of the rule that one must be at least 18 to decide cannot be so numerous as to make adjudication impractical; and though a competent adult’s voluntary decision to refuse medical treatment should generally be respected, the state may reject a mature minor’s decision upon review by an indifferent judge of the minor’s capacities and reasons. The judge reviews not the substantive merits or prudence of the decision, but whether the decision promotes the interest in decisional autonomy, by asking among other things whether the decision is the minor’s own, is tethered to core commitments rather than based on arbitrary preferences, and could be regarded as reasonable to the minor’s ‘future self’. (shrink)

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision (...) class='Hi'>making to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care. (shrink)

International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income countries, highlighting the (...) need to take account of voices from more diverse contexts. Between January and March 2014, 56 community representatives and secondary school students were involved in eight group discussions to explore views on the acceptability of involving children and adolescents in research, and how these groups should be involved in decision-making about their own participation. Discussions were voice-recorded and transcriptions analyzed using Framework Analysis, combining deductive and inductive approaches. Across these discussions, the idea of involving children and adolescents in decision-making about research participation was strongly supported given similar levels of responsibility carried in everyday life; existing capacity that should be recognized; the opportunity for learning involved; varying levels of parental control; and generational shifts towards greater understanding of science for adolescents than their parents. Joint decision-making processes were supported for older children and adolescents, with parental control influenced by perceptions of the risks involved in participation. Moves towards more active involvement of children and adolescents in planning studies and in making decisions about their participation are supported by these findings from Kenya. Important emerging considerations include the need to take account of the nature of proposed studies and prevailing attitudes and understanding of research in identifying children’s and adolescents’ roles. More research is needed to expand diversity and develop approaches to joint assent and consent processes that would fairly represent children’s and adolescents’ wishes and interests, towards their long term benefit. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Being the Right Kind of Parent:Conceiving PeopleCamisha Russell (bio)Daniel Groll's Conceiving People makes one central claim regarding the ethics of using egg or sperm donations to create a child (that one intends to parent): "[P]arents should use an open donor because doing so puts their resulting child in a good position to satisfy the child's likely future interest in having genetic knowledge" (Groll 2021, 12, original italics).Amid myriad (...) thorny ethical questions surrounding assisted reproduction, Groll's decision to focus on a choice that intended parents in need of donor gametes must make before their future child is even conceived—a choice that is typically taken very seriously—makes a lot of sense. The question is live, rarely completely determined as a matter of policy or law, and, as Groll demonstrates, important to most donor-conceived people (and therefore to the families of which they are a part). For this increasing number of individuals and families, a cultural shift in how we think about open versus anonymous donors would have a significant (and as Groll argues, positive) impact.Groll's carefully built argument is important not only for the paths of ethical reasoning that it highlights, but for those common rationales it gently but firmly sets aside (e.g., the donor-conceived person's medical need to know their genetic history or the idea that knowledge of one's genetic origins is the best or only way to truly know oneself). Groll's work is attentive to the types of relationships that foster the emotional health of families, and it's grounded in the experiences and desires articulated by donor-conceived people themselves. For this reader, these are the book's greatest strengths, along with the fact that Groll is often quite funny in his examples, which makes the examples highly relatable.Of course, the challenge for philosophers in writing books of ethical importance for "laypeople" is to offer something an average educated adult can understand while addressing the more technical theoretical issues that matter to ethicists. I would expect Groll's text to satisfy ethicists because his definitions and distinctions are scrupulously clear, and he engages the existing philosophical literature well. As for laypeople, there are surely a few moments in which they will find themselves in the theoretical weeds, so to speak, but Groll has [End Page 193] successfully made the book largely modular, such that they should get a lot from just reading the chapters of direct interest (Groll 2021, 29).Chapter 2, "Keeping Secrets," is essential for intended parents seeking ethical guidance. Groll notes that professional opinion on donor conception has shifted from seeing nondisclosure of a child's donor-conceived status as a moral requirement (to protect privacy and avoid family stigma) to recommending disclosure. He then reviews standard arguments for disclosure: (1) the "profound importance" of known genetic origins to health identity formation, (2) the medical importance of knowing to whom you are (and are not) genetically related, and (3) the harm that keeping secrets can do to family members and family functioning. While Groll agrees with the latter two arguments, he introduces and emphasizes a new argument: the Intimacy argument, in which he convincingly argues that keeping a child's genetic origins secret "violates norms of intimacy by creating distance between parents and children that is at odds with the demands of intimacy in the parent-child relationship" (Groll 2021, 44, original italics). Though, in many ways, this chapter's argument is separate from the central argument for the use of open donors constructed in the rest of the book, I find it compelling and wonder whether it could hold up more of the open donor argument, placing less weight on the Significant Interest view that Groll introduces in the next chapter (and the concerns regarding bionormativity that emerge from that view).In the third chapter, Groll moves from disclosure to the information that's available to be disclosed. That is, it is one thing to commit to telling a child they were donor-conceived after conception. It is another to commit before conception to choosing a donor willing to be known to the future child when... (shrink)

Information communication technology is spreading fast and wide. Driven by convenience, it enables people to undertake personal tasks and make decisions more easily and efficiently. Convenience enjoys an air of liberation as well as self-expression affecting all areas of life. The industry for children's toys is a major economic market becoming ever more tech-related and drawn into the battle for convenience. Like any other tech-related industry, this battle is about industry dominance and, currently, that involves networked toys. (...) Networked toys aim to enhance convenience for children and parents alike. Increasingly difficult to resist, these convenient networked devices are also a societal game changer. Neatly nestled in a lacuna juris and surrounded by a lack of clinical evidence, networked toys raise complex ethical issues concerning human development. This article lays bare the regulatory nexus for networked toys and invites ethical thinking to fill the gap to ensure sufficient protection for all human developmental stages. Networked toys not only affect but also might interfere with child development. Therefore, the article initially summarises the four key psychological stages through which the neurological development of the human brain processes. Each of these stages involves vital windows for human development in cognitive, emotional and social dimensions. Missing any of these developmental windows changes an individual human for life. The article then takes a look at the two main legal frameworks protecting the stages of human development which are applicable to networked toys: First, the examination of the human rights framework with its major segments emanating from the fundamental rights to privacy for family and home, to a child's education as well as to personal data reveals the use of current networked toys as a shielded part of parenting which tends to be at odds with privacy and data protection requirements. Second, the product liability framework for toy manufacturers requires evidence-based causality for putting a child's safety at risk. Unfortunately, these legal frameworks fail to offer sufficient protection of the human developmental stages. There is a lacuna juris. Although networked toys involve the risk of negatively impacting human development in every dimension, clinical psychological studies are impossible to acquire as court evidence for product liability because they take too long to provide reliable data while exposing several generations of children to the examined risk in the process. Meanwhile the temptation of convenience continues to drive the industry and consumers of networked toys and devices, which are already impacting children of all age groups. Accepting this phenomenon as an element of cognitive dissonance in society and in science falls far short of an appropriate ethical balance. The need for creating such an ethical balance concerning networked toys is all the more imperative because even if the networked toy industry managed to eliminate all psychological risks for human development and every legal conflict with privacy and security, significant ethical and societal risks of networked toys remain due to inevitable technological bias. Against these mounting changes, it is suggested that only an ethical approach of interdisciplinary research and learning seems most promising to develop an appropriate equilibrium between the complex challenges posed by networked toys and the societal values at stake. (shrink)

The COVID-19 pandemic during 2020–2022 raised ethical questions concerning the balance between individual autonomy and the protection of the population, vulnerable individuals and the healthcare system. Pediatric COVID-19 vaccination differs from, for example, measles vaccination in that children were not as severely affected. The main question concerning pediatric vaccination has been whether the autonomy of parents outweighs the protection of the population. When children are seen as mature enough to be granted autonomy, questions arise about whether they (...) have the right to decline vaccination and who should make the decision when parents disagree with each other and/or the child. In this paper, I argue that children should be encouraged to not only take responsibility for themselves, but for others. The discussion of pediatric vaccination in cases where this kind of risk–benefit ratio exists extends beyond the 2020–2022 pandemic. The pandemic entailed a question that is crucial for the future of public health as a global problem, that is, to what extent children should be seen as responsible decision-makers who are capable of contributing to its management and potential solution. I conclude that society should encourage children to cultivate such responsibility, conceived as a virtue, in the context of public health. (shrink)

Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating (...) to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process entails and what factors determine patient involvement in the process. However, there is agreement that children have a right to bodily and brain integrity, which should only be infringed upon in rare circumstances. (shrink)

Young children with cancer are treated with interventions that can have a high risk of compromising their reproductive potential. ‘Fertility preservation’ for children who have not yet reached puberty involves surgically removing and cryopreserving reproductive tissue prior to treatment in the expectation that strategies for the use of this tissue will be developed in the future. Fertility preservation for prepubertal children is ethically complex because the techniques largely lack proven efficacy for this age group. There is professional (...) difference of opinion about whether it is ethical to offer such ‘experimental’ procedures. The question addressed in this paper is: when, if ever, is it ethically justifiable to offer fertility preservation surgery to prepubertal children? We present the ethical concerns about prepubertal fertility preservation, drawing both on existing literature and our experience discussing this issue with clinicians in clinical ethics case consultations. We argue that offering the procedure is ethically justifiable in certain circumstances. For many children, the balance of benefits and burdens is such that the procedure is ethically permissible but not ethically required; when the procedure is medically safe, it is the parents’ decision to make, with appropriate information and guidance from the treating clinicians. We suggest that clinical ethics support processes are necessary to assist clinicians to engage with the ethical complexity of prepubertal fertility preservation and describe the framework that has been integrated into the pathway of care for patients and families attending the Royal Children’s Hospital in Melbourne, Australia. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Ethics in Light of ChildhoodDavid Cloutier (bio)Review of Ethics in Light of Childhood John Wall Washington, D.C.: Georgetown University Press, 2010. 204 pp. $34.95.John Wall’s ambitious volume contends that “considerations of childhood should not only have greater importance but fundamentally transform how morality is understood” (1). He rightly suggests that “the story of childhood cannot be told in one-dimensional formulas of either innocence and vulnerability or unruliness (...) and undevelopment” (7), but instead require a new paradigm for ethics: “childism.” He questions three historical views of childhood: the “top-down,” the “bottom-up,” and the developmentalist. Wall splendidly moves beyond these views and demonstrates that considering children should instruct us in the limitations of ordinary approaches to ethics—not only for children’s sake but for adults too.How so? Wall’s constructive section considers ontology, teleology, and de-ontology. In them, relying heavily on twentieth-century continental philosophy, supplemented by some social-scientific literature and numerous anecdotal examples, he develops an overall approach to the moral life. First, he argues for an ontology of “restless and endless play” (36) reflective of the human capacity for creativity possessed by both children and adults. Secondly, the moral life has a teleology of “narrative expansion,” with a constant movement toward a “more richly diverse life story” (60). Finally, moral obligation involves a constant “decentering” of the self in which “the world I create for myself should be disrupted and stretched out as far as possible by genuine human difference” (88). Building on the insights of top-down and bottom-up traditions, and going beyond the “flatly unilinear assumptions” of developmental “stageism” (81) ethics involves a constant circularity, exemplified in the final three chapters on specific issues. For example, families who “create increasingly expansive family worlds” engage in top-down transmission of tradition, developmental formation of relationality, and bottom-up nurturing of otherness (149). These qualities apply not only to children but to parents as well, and thus satisfy Wall’s desire for an ethics that is fully “child-inclusive” and that does not privilege adult agents. He succeeds admirably at demonstrating that the real agency children actually possess and exercise, as well as their vulnerability and passivity, are not simply incomplete versions of what adults possess fully.I would raise two concerns. First, the book works so hard to avoid any kind of linearity that criteria enabling judgment seem lacking—for example, surely some [End Page 195] forms of “disruption” are not to be welcomed (especially by children). The telos of “narrative expansion” so strongly refuses to privilege any perspective that it threatens to empty out what one might gingerly call “adult commitments”—to stable love, production, civic life, and fine arts—all of which require virtue (absent here), and which seem necessary for children to flourish. Aspiring “to go on creating oneself endlessly” (58) can be a fruitful depiction of adult life, or it can be an immature escapism. Without a thicker telos, the distinction is difficult to make.Second, his category of “childism” (3) forces him to artificially avoid any telos of maturation. In parallel with other “isms” (e.g., feminism), he argues that children are “full human beings,” live in “fully meaningful moral worlds,” and are “full participants in... human moral experience” (29). “Full” appears throughout, but the inclusion parallel clashes with maturation in human life. True, children and adults have both agency and vulnerability (39), but children, generally speaking, are more vulnerable and are less capable agents, and thus will have particular needs (and also offer particular gifts to adults). “Childism” sometimes obscures the particularities of childhood, and how we are bodily and culturally directed toward some “maturity.” Yet these concerns should not diminish Wall’s achievement in displaying how childhood can teach adults much about ethics.David CloutierMount St. Mary’s UniversityDavid Cloutier David Cloutier is an associate professor of theology at Mount St. Mary’s University. He received his BA from Carleton College and his PhD from Duke University. He is the author of Love, Reason, and God’s Story: An Introduction to Catholic Sexual Ethics (Anselm/St. Mary’s Press, 2008) and editor of Leaving... (shrink)

Infants are unable to make their own decisions or express their own wishes about medical procedures and treatments. They rely on surrogates to make decisions for them. Who should be the decision-maker when an infant’s biological parents are also minors? In this paper, we analyse a case in which the biological mother is a child. The central questions raised by the case are whether minor parents should make medical decisions on (...) behalf of an infant, and if so, what are the limits to this decision-making authority? In particular, can they refuse treatment that might be considered best for the infant? We examine different ethical arguments to underpin parental decision-making authority; we argue that provided that minor parents are capable of fulfilling their parental duties, they should have a right to make medical decisions for their infant. We then examine the ethical limits to minor parents’ decision-making authority for their children. We argue that the restricted authority that teenagers are granted to make medical decisions for themselves looks very similar to the restricted autonomy of all parents. That is, they are permitted to make choices, but not harmful choices. Like all parents, minor parents must not abuse or neglect their children and must also promote their welfare. They have a moral right to make medical decisions for their infants within the same ‘zone of parental discretion’ that applies to adult parents. We conclude that adult and minor parents should have comparable decision-making authority for their infants. (shrink)

Bioethics has dedicated itself to exploring and defending both reasons for and against certain aspects of clinical care, biomedical research and health policy, including what decisions must be made, who should make them, and how they should be made. In pediatrics, it’s widely acknowledged that parents’ reasons may matter pragmatically; attending to parents’ reasons is important if we want to work with families. Yet the conventional view in pediatric ethics is that parents’ reasons (...) are irrelevant to whether a decision is permissible or impermissible according to accepted ethical standards. In this paper, we explore whether parents’ reasons matter ethically and, if so, in what way and for whom. First, we clarify what we mean by ‘reasons.’ Second, we provide an overview of how reasons are typically treated in medical decision-making and pediatric ethics. Third, we analyze a hypothetical pediatric case to illustrate how changing reasons can transform ethical analyses, including by contributing to where and how clinicians and ethicists draw the boundaries intrinsic to common pediatric ethical frameworks. We push back against the conventional view and argue that parents’ reasons matter ethically in several ways. We call for further research on the role of parents’ reasons in clinical ethics deliberation. (shrink)

The public often believes that parents have a right to make medical decisions about their child. The idea that, in respect of children, doctors should do what parents tell them to do is problematic on the face of it. The effect of such a claim would be that a doctor who acted deliberately to harm a child would be making a morally correct decision, providing only that it is what the child’s parents (...) said they wanted. That is so obviously nonsense that it cannot be what people who claim it actually mean. In this paper, I suggest that the claim actually represents either or both of two misunderstandings. It can be a result of wrongly appealing to the principle of respect for autonomy, or a belief that doctors are not committed to acting in the interests of the child. In this paper, I show that, while neither belief is entirely justified, there are elements of truth in both. I argue that if ethically correct decisions are those that are directed to improving the quality of a child’s existence, then neither parents nor doctors are in a position to make ethically correct decisions about a child except in discussion with one another. Where such discussion is not possible, I suggest there should be a national Children’s Interests Panel to agree on the child’s interests. The panel should include, but not be limited to, paediatricians and lawyers and its decisions should be legally binding on all parties. (shrink)

Healthcare decision making for children has adopted the best interest of the child standard, a principle originally employed by judges to adjudicate child placement in the case of parental death, divorce, or incompetence. Philosophers and medical ethicists have argued whether the best interest principle is a guidance principle (informing parents on how they should make healthcare decisions for their child), an intervention principle (deciding the limits of parental autonomy in healthcare decision making), or (...) both. Those who defend it as only a guidance principle often cite the harm principle as the appropriate intervention principle. In this article, I challenge current use of the best interest principle in pediatric decision making as a guidance principle and as an intervention principle. I propose a model that I call constrained parental autonomy, which focuses on promoting and protecting the child’s primary goods or basic needs. I show that constrained parental autonomy can serve as both a guidance principle and an intervention principle in making decisions. I conclude by examining a case study involving bone marrow donation by a young child to her sister. (shrink)

o privacy regarding family matters, common law rule, and a general presumption that parents or guardians will act in the best interest of their incompetent child. However, over the years, the courts have gradually recognized that children younger than 18 years who show maturity and competence deserve a voice in determining their course of medical treatment. This article will explore the rights and interests of minors, parents, and the state in medical decision making and will (...) address implications for nursing administrators and leaders.... (shrink)

BackgroundBariatric surgery for children and adolescents is becoming widespread. However, the evidence is still scarce and of poor quality, and many of the patients are too young to consent. This poses a series of moral challenges, which have to be addressed both when considering bariatric surgery introduced as a health care service and when deciding for treatment for young individuals. A question based (Socratic) approach is applied to reveal underlying moral issues that can be relevant to an open and (...) transparent decision making process.DiscussionA wide range of moral issues with bariatric surgery for children and adolescents is identified in the literature. There is a moral imperative to help obese minors avoiding serious health problems, but there is little high quality evidence on safety, outcomes, and cost-effectiveness for bariatric surgery in this group. Lack of maturity and family relations poses a series of challenges with autonomy, informed consent, assent, and assessing the best interest of children and adolescents. Social aspects of obesity, such as medicalization, prejudice, and discrimination, raise problems with justice and trust in health professionals. Conceptual issues, such as definition of obesity and treatment end-points, present moral problems. Hidden interests of patients, parents, professionals, industry, and society need to be revealed.SummaryPerforming bariatric surgery for obese children and adolescents in order to discipline their behavior warrants reflection and caution. More evidence on outcomes is needed to be able to balance benefits and risks, to provide information for a valid consent or assent, and to advise minors and parents. (shrink)

Parents frequently attempt to shield their children from distressing prognostic information. Pediatric oncology providers sometimes follow parental request for non-disclosure of prognostic information to children, invoking what we call the stability of the family argument. They believe that if they inform the child about terminal prognosis despite parental wishes, cohesion and family structure will be severely hampered. In this paper, we argue against parental request for non-disclosure. Firstly, we present the stability of the family argument in more (...) detail. We, then, set out the (conceptual, legal, systemic) entitativity of the family and the kind of value the stability of the family argument assumes, before we set on to critically evaluate the argument. Our analysis shows that disclosure of prognostic information to children does not necessarily destabilize the family to a greater extent than non-disclosure. In fact, a systemic perspective suggests that mediated disclosure is more likely to result in a (long-term) stability of the family than non-disclosure. It is in the interest of the family to resist the initial aversive reaction to delivering bad news. In the final part, we draw a set of recommendations on how to facilitate decision-making in face of parental request for non-disclosure. (shrink)

In summary, the question of how to construe the procedure called reversibility cannot be given an absolute answer. No one moral interpretation of the principle is universally applicable, that is, applicable to all moral issues. The decision concerning which to apply cannot be made a priori, but only in context - that is, only when we are faced with a particular moral problem. Moreover, there appears to be no rule which would enable us to choose which version is correct in (...) a particular case. It is a matter of judgment.That the various versions represent a moral progression from lower to higher constructions is debatable. We have seen that the altruism of reversibility3 - the ethic of care - may recommend itself in some personal relations to the point of making either version of reversibility4 irrelevant. Similarly, it is not clear that reversibility3 is always higher than reversibility2. For example, parents in trying to decide what is morally best for a young child should often - in the spirit of the second construction - substitute the judgment of their mature selves for the judgment of the immature self of the child. Moreover, this substitution may not be justifiable in terms of either utility or autonomy.If I seem to have ignored reversibility1 in this discussion that is because I consider it outside morality: it is, if anything, a principle of self-interested calculation. If Baier is correct in holding that we teach children to think morally when we get them to take the standpoint of others, that requires, I believe, getting them beyond the stage of crude reciprocity. If Piaget and Kohlberg are correct in their developmental claims, we cannot immediately teach children reversibility4 but must help them progress through the other two versions. There is some basis for thinking that children can transcend egoism and sympathize with others much earlier than Kohlberg allows - an important consideration in the development of a system of moral education. That point has been pursued by Michael Pritchard in his critique of Kohlberg. Pritchard, p 44. My point is a different one: even granting Kohlberg's theory of development (which asserts, for example, that a particular cognitive ability is required to think like a Kantian), it does not follow that the moral thinking which accompanies the highest cognitive stage is morally superior to the moral thinking which accompanies the lesser cognitive stages. That it is cognitively easier to master reversibility3 than reversibility4 does not settle the question of which is morally superior. Rather than arguing about which moral version of reversibility is morally best- a pointless debate if the desirability of a version is understood as contingent upon appropriateness with respect to context - we should instead celebrate the richness of the concept of reversibility. In teaching students the moral point of view by getting them to put themselves in another's place, we would not be asking them to master a rigid formula, but rather to be sensitive to the decisional context and to make a thoughtful judgment about which version of reversibility is most appropriate to that context. We would not be teaching them either moral relativism or moral absolutism, but the complexity of trying to make a moral decision by applying an ancient and philosophically rich ethical principle. (shrink)

In this book, Joseph Millum explains how parental rights and responsibilities are acquired, what they consist in, and how parents should go about making decisions on behalf of their children. In doing so, he provides a set of frameworks to help solve pressing ethical dilemmas relating to parents and children.

Approximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child’s medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child’s biological parents should play in making (...) serious medical decisions. Here we highlight some of the ethical challenges inherent in making these decisions for children in foster care, as seen through the lenses of a child welfare provider, an inpatient care physician, and a primary care pediatrician. (shrink)

Therapeutic privilege is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might be (...) inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients’ needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal. (shrink)

BackgroundThe complexity of decision-making in the paediatric context is well recognised. In the majority of cases, parents and healthcare professionals work together to decide which treatments the paediatric patient should receive. On occasions, however, parental wishes conflict with what clinicians think is best for the paediatric patient. Where persistent disagreement between clinicians and parents exists, clinicians must ascertain if they have a moral, professional, and legal obligation to overrule the parents' decision and implement their preferred (...) option.PurposeFew decision-making frameworks to assist in addressing the ethical issues that arise in clinical decision-making relate specifically to the paediatric context. Diekema's Harm Threshold Framework and the Zone of Parental Discretion Framework assist in determining whether parental decisions should or should not be overridden. This paper examines the similarities and differences between these frameworks.MethodsThe frameworks are analysed i... (shrink)

This book offers a novel theory of childhood well-being as a social good. It re-examines our fundamental assumptions about parenting, parental authority, and a liberal society's role in the raising of children. The author defends the idea that the good of a child is inexorably linked to the good of society. He identifies and critiques the problematic assumption that parenting is an extension of individual liberty and shows how we run into problems in medical decision-making for children (...) because of this assumption. He develops an objective conception of what is good for a child in liberal society, drawing on the assumptions of liberty, and from here constructs a set of things that society and its members owe children. There are ways in which society should support and intervene in parental decisions to guarantee a child's well-being. Ultimately, raising children is a social activity that requires input from society. The author then applies this theory of childhood well-being to develop a framework for medical decision-making for children. He also uses practical examples, such as vaccinations, parental leave, and healthcare access, to demonstrate the implications of his theory for public policy. The Limits of Parental Authority: Childhood Wellbeing as a Social Good will be of interest to research and advanced students working in bioethics, political philosophy, and public health policy. (shrink)

The bioethical principle of autonomy is problematic regarding the future of the embryo who lacks the ability to self-advocate but will develop this defining human capacity in time. Recent experiments explore the use of clustered regularly interspaced short palindromic repeats /Cas9 for germline engineering in the embryo, which alters future generations. The embryo’s inability to express an autonomous decision is an obvious bioethical challenge of germline engineering. The philosopher Joel Feinberg acknowledged that autonomy is developing in children. He advocated (...) that to reserve this future autonomy, parents should be guided to make ethical decisions that provide children with open futures. Here, Feinberg’s 1980 open future theory is extended to the human embryo in the context of CRISPR germline engineering. Although the embryo does not possess the autonomous decision-making capacity at the time of germline engineering, the parental decision to permanently change the unique genetic fabric of the embryo and subsequent generations disregards future autonomy. Therefore, germline engineering in many instances is objectionable considering Feinberg’s open future theory. (shrink)

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex’s parents must decide whether to conduct sequencing on his siblings to help determine if (...) there is a genetic cause for Alex’s developmental disabilities. Second, Alex’s parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex’s parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child. (shrink)

Whole genome sequencing is quickly becoming more affordable and accessible, with the prospect of personal genome sequencing for under $1,000 now widely said to be in sight. The ethical issues raised by the use of this technology in the research context have received some significant attention, but little has been written on its use in the clinical context, and most of this analysis has been futuristic forecasting. This is problematic, given the speed with which whole genome sequencing technology is likely (...) to be incorporated into clinical care. This paper explores one particular subset of these issues: the implications of adopting this technology in the prenatal context without a good understanding of when and how it is useful. Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways. Most notably, whole genome sequencing would radically increase the volume and scope of available prenatal genetic data. The wealth of new data could enhance reproductive decision‐making, promoting parents' freedom to make well‐informed reproductive decisions. We argue, however, that there is potential for prenatal whole genome sequencing to alter clinical practice in undesirable ways, especially in the short term. We are concerned that the technology could (1) change the norms and expectations of pregnancy in ways that complicate parental autonomy and informed decision‐making, (2) exacerbate the deleterious role that genetic determinism plays in child rearing, and (3) undermine children's future autonomy by removing the option of not knowing their genetic information without appropriate justification. (shrink)

We explain libertarian thought about family and children, including controversial issues in need of serious attention. To begin our discussion of marriage, we distinguish between procedural and substantive contractarian approaches to marriage, each endorsed by various libertarians. Advocates of both approaches agree that it is a contract that makes a marriage, not a license, but disagree about whether there are moral limits to the substance of the contract with only advocates of the substantive approach accepting such. Either approach, though, (...) offers advantages over the current licensing system, so we discuss paths from that to a contractarian system. We also discuss the concept of marriage itself, the ages of consent for marriage, sexual activity, and reproduction, as well as how marriages can be dissolved, and coercion that sometimes occurs in marriage. We then turn to children. We first discuss reproductive freedom and then discuss the moral relationship between children and parents, especially considering stewardship, propertarian, and best interests approaches (we also touch on anti-natalism). One of the biggest issues facing parents is how to properly raise and educate children; we discuss this in depth and consider the sort of schooling that should be offered in a free society. Since children lack the requisite ability to consent, they cannot choose their education; how to respond to this is of the utmost importance for libertarians. As we note, the same issue of consent looms large for many forms medical treatment of children. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Over the YearsKimberly RockerMy daughter was diagnosed with an Ependymoma brain tumor in 1986 at the age of 19 months. Our journey began when we realized that we had become concerned about her falling. For example, we were staying at a lodge with a large stone fi replace and both my husband and myself were careful to cover the area with pillows from the couch. Then there were (...) the sporadic “jokes” from strangers who would say, “what has she been drinking?” as she walked past with a slight stagger in her gait. We took her to the pediatrician who listened to my concerns and then watched her walk in a narrow hallway. Surprisingly, she didn’t seem to stagger and she walked very “toddler–like” down the hall. We learned later that this tighter area would help compensate for my daughter’s lack of balance. We were told that she simply needed to develop her gross motor skill more and that she would outgrow it and I was simply an over–concerned first time mom. Unfortunately, the pediatrician failed to recall that my daughter had been walking since she was 11 ½ months old and the current lack of coordination and balance was actually a regression in her motor skills. This negative change in her abilities should have been seen as a red flag.I still couldn’t shake the nagging feeling that something was wrong. Since our doctor had been unresponsive to my concerns, I made an appointment with another doctor. I told my husband that if the new doctor is just as unconcerned about our daughter’s gross motor skills, then I would let it go. The new doctor refrained from making judgments about my parenting skills and concerns. She listened carefully as I described the situation. She examined my daughter and watched her walk in the large hospital hallway. Her next step, one that our regular doctor failed to do, was to measure her head circumference. The measurement exceeded the 100–percentile mark. They were immediately concerned and ordered a CT scan right away. The diagnosis was a brain tumor and due to the size and location, they didn’t expect her to live. We called family and said our beautiful little girl was very sick and was going to die.As a parent, we often know our children well. This can be both a help and a hindrance. Since the changes in our daughters walking skills declined gradually over several months, it was difficult for us to see just how far she had declined. We have a [End Page 25] video of our daughter taken just a few weeks before her diagnosis. I have only watched it a couple of times because it is difficult to see. It is painfully obvious that there is something terribly wrong. It does make me question our parenting and ability to know what is best for our child’s well being. Add to that a doctor that made you feel very inadequate as a parent, it was hard to have the confidence to question the doctor. But, that small quiet voice kept getting louder, demanding to be heard.My daughter will be 29 years old this August. One thing I remember very clearly during that first year is that I just wanted to know that somewhere there was another child who survived to live a happy, healthy life. At that time, it was difficult to find. During those first few months after our diagnosis, we met three other families who had daughters with brain tumors, Nina, Larissa and Wendy. My daughter is the only one still alive. We thank God for the gift of life He gave to our daughter but are full of sorrow for the families that suffered such a difficult loss. There were many miracles and many challenges along the way regarding her recovery. I believe our story can give hope to families as they struggle with this terrible diagnosis.One of our first miracles was the fact that the neurosurgeons were able to remove all visible evidence of the tumor. This is rarely the case since removing the tumor can also damage healthy areas of... (shrink)

ABSTRACT This paper focuses on the issue of aborting abnormal fetuses from the standpoint of the prerogatives and obligations of parents. First, two intuitively‐based models of parenthood are developed. In the Trustee Model, parental authority is grounded in the obligation of parents to promote the interests of children, while the Artisan Model locates parental authority in the intrinsic value of parenthood as a mode of parental self‐expression. Reasons are given for believing that neither of these models, taken (...) individually, contains a complete or adequate picture of parenthood and that both have counterintuitive implications. Under the assumption that there is little hope of developing a master model for parenthood to supplant the two inadequate models, five principles are developed for determining how the two models should be applied in making moral decisions. These principles are then applied to five categories of abnormal fetuses. The conclusion is that abortions are justified in the first three categories (involving severe abnormalities), but not in the fifth category (involving only slight deformities). The fourth category requires parental discretion. Finally, a check on these conclusions is provided by comparing them with a parental action that would generally be considered impermissible, namely the decision of a Jehovah's Witness not to permit a blood transfusion for his or her child in a life‐threatening situation. (shrink)

Many people move house at some point during their childhood and not rarely more than once. While relocations are not always harmful for under-aged children, they can, and frequently do, cause great disruption to their lives by severing their social ties as well as any attachments that they might have to their neighbourhood, town, or wider geographical region, with long-lasting psychological effects in some cases. Since it is increasingly recognised within normative philosophy as well as within Western societies that (...) older minors should have the final say over certain issues that significantly affect their lives (think, for instance, of custody disputes, decisions about whether to get specific vaccinations or use contraceptives), this raises the question: Can it be morally incumbent upon parents to give their minor children a veto over family relocation? This article argues that the answer is affirmative. Specifically, it suggests that such duties exist if and only if (i) parents are not morally required to either relocate their families or stay put, (ii) the stakes of the decision about a family relocation are fairly low, and (iii) the children have the competence to make these decisions, as many older minors do. (shrink)

The case of Charlie Gard sparked an ongoing public and academic debate whether in court decisions about medical treatment for children in England & Wales the best interests test should be replaced by a harm threshold. However, the literature has scantly considered (1) what the impact of such a replacement would be on future litigation and (2) how a harm threshold should be introduced: for triage or as standard for decision-making. This article directly addresses these (...) gaps, by first analysing reported cases in England & Wales about medical treatment in the context of a S31 order, thus using a harm threshold for triage and second comparing court decisions about medical treatment for children in England & Wales based on the best interest test with Dutch and German case law using a harm threshold. The investigation found that whilst no substantial increase of parental discretion can be expected an introduction of a harm threshold for triage would change litigation. In particular, cases in which harm is limited, currently only heard when there are concerns about parental decision-making, may be denied a court hearing as might cases in which the child has lost their capacity to suffer. Applying a harm threshold for triage in decisions about withholding or withdrawing life-sustaining treatment might lead to a continuation of medical treatment that could be considered futile. (shrink)