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Shaping Parental Authority Over Children's Bodies
Abstract
In the healthcare setting, parental decisions to size, shape, sculpt, and mine children’s bodies through the use of non-therapeutic medical and surgical interventions are a matter of parental choice except in extraordinary cases involving grievous harm. This Article questions the assumption of parental rights that frames the current paradigm for medical decisionmaking for children. Focusing on cases involving eye surgery, human growth hormone, liposuction, and growth stunting, I argue that by allowing parents to subordinate their children’s interests to their own, the current paradigm distorts the parent-child relationship and objectifies children in violation of the moral principle, deeply embedded in American legal tradition, that no person, even a parent, may subordinate the life, liberty, or body of another for his or her own purposes. I propose an alternative. Pushing analogies developed in family law and moral philosophy to respect children as complete but vulnerable human beings, I develop a trust-based construct of the parent-child relationship, in which the parents are assigned trustee-like powers and responsibilities over a child’s welfare and future interests, and charged with fiduciary-like duties to the child. Application of the trust-based construct in the health-care setting separates medical decisions that belong to parents from decisions that belong to children and those that should be made by a neutral third party.
... Hall (2002) Hall thus places the desire for, and aim of, normality to neatly categorise "deviant" bodies into either one category or another: disabled or non-disabled; male or female; mentally unwell or mentally well. These various technologies are sometimes referred to as "shaping" people (Parens, 2006;Ouellette, 2010). ...
... The complex ethics of this kind of surgery becomes more pronounced when it is offered to people who are judged "unable" to give or deny consent, such as children with learning difficulties. Some have argued that the main ethical concern is primarily about the power dynamics between a child and their parent(s), and the parents' desire for control of their children's bodies, that objectifies children and does not allow them to be seen as complete humans (Ouellette 2010). Kittay (2011) discusses the case of Ashley X, a six-year-old who is described as "profoundly intellectually limited as well as incapable of mobility, holding up her head, or doing anything at all for herself" (p. ...
... Heck, if you put it that way, it sounds impossible..." (Kittay, 2011, p. 619). The idea of caring for a six-foot-tall, 190lbs person is in contrast to Ashley X who has been described as having "mental development [which] had never advanced beyond that of an infant" (Gunther & Diekema, 2006, in Ouellette, 2010. This seems to cut to the crux of the issue: the idea of a physically adult (literally "high") person with an infant's mind (metaphorically "low") is presented as an embodied contradiction. ...
This thesis explores how (dis)abled children in one inner-city English primary
school experience classroom space in an embodied way. It takes Disabled
Children’s Childhood Students (DCCS) as a starting point and applies
Deleuzoguattarian ideas such as the assemblage and becoming, to contribute
new knowledge to how classroom space disables and enables. The study took
place over a seven-month period and involved 47 children who, in a novel
approach, took part regardless of a label of special educational needs (SEN),
disability or impairment. The children shared their experiences through various
creative and visual qualitative methods, including photography, drawings and
model rooms. These, combined with observations of the whole classroom
space, were analysed thematically, paying attention to lines of flight, leading to
various significant findings. Firstly, I found that the classroom space was
saturated by the idea of vertical development: a normative expectation that
children grow physically and metaphorically upwards towards adulthood.
However, I also observed resistance from children to this idea. One original
contribution to knowledge that this study makes is seeing photography as both
a creative method and a form of resistance, as children who took part could turn
the lens back on adults. Further insights included how certain forms of
embodiment in the classroom are encouraged while others are discouraged.
These are linked to ideas of crip epistemic insight: a perspective that privileges
the experiences of disabled people’s embodied experiences of the world.
Finally, I discuss the resistance and joyful potential in “leaks” which challenge
the boundaries imposed on children’s bodies. Specifically, I contribute to the
small but growing field of toilet studies in discussing expected behaviour in and
around toilets. The thesis takes ideas from DCCS and assemblage theory and
applies them in new ways to (dis)abled children’s embodied experiences,
making valuable methodological and theoretical contributions.
... The right to bodily integrity is indeed one of those right that fall within the Feinberg's category of 'rights in trust' that should be saved for when the child will reach adulthood (Feinberg 1992). For Ouellette the children's right to an open future is grounded on the right to bodily integrity and self-determination (Ouellette 2010) 39 . This right, coined for the first time by Feinberg, 'protects the child against having important life choices determined by others before she has the ability to make them for herself' (Millum 2014). ...
Many international and regional human rights’ measures were adopted to
eliminate female genital modifications, as they are performed in lack of medical
necessity and interfere with the growth of healthy genital tissue, which can
lead to severe consequences for women’s physical and mental health. The aim
of this paper is to contribute to the discussion on other practices that are carried
out on children without their consent and without therapeutic reasons, such
as male circumcision and intersex treatment. These practices will be discussed
by examining three different arguments: the best interest standard, the do no
harm principle and the right to bodily integrity combined with the children’s
right to an open future. In doing so, the intent is to find out if by opening the
discussion to other forms of early non-therapeutic genital interventions it could
be a way to improve the protection of children against embodied practices that
are grounded on cultural/social norms.
... Depending on the jurisdiction, a legislature or court could conclude that parental consent to infant genital surgery performed for psychosocial reasons should also require a court order. 43,44,45 Given the growing international consensus that only the patients, when they are old enough to assess the risks and the benefits, should have the power to make the decision to undergo surgery, some courts may halt or severely curtail the ability of parents to approve these procedures. 43 ...
Some physicians believe that medically unnecessary cosmetic surgeries on infants with intersex traits provide a psychosocial benefit that outweighs the risks to the child undergoing the surgery. Many experts in medicine and other disciplines have called for a delay of these procedures because no comprehensive studies show that they result in a psychological benefit, much less a benefit that outweighs the reported physical and emotional risks.
In the absence of comprehensive outcome studies proving which approach is correct, the law, as viewed through a human rights lens, may help shed light on how legal institutions and treatment teams should proceed. A growing number of governments and NGOs have found that these surgeries violate children’s fundamental human rights. Additional legal institutions are considering whether to adopt similar resolutions and laws calling for a delay in these procedures until the patient is able to consent or assent to the treatment.
In the absence of specific legal guidance, treatment teams should ensure that the procedures they adopt protect the fundamental human rights of their patients. First, they should seek a court order authorizing medically unnecessary surgeries that may affect reproductive and other fundamental interests. Second, the treatment team must ensure that parents are given complete information, including the fact that they are authorizing a treatment that a number of governments and organizations have found to be a violation of the child’s basic human rights. Finally, after the treatment team determines that the condition poses no immediate or future health risks, the team should be guided by mental health experts (as opposed to medical experts), as well as people with intersex traits and their parents, who are in a better position to help parents reach the decision that is most likely to lead to the best psychosocial outcome for the children.
... The withstanding clinical recommendation in the United States is to deploy intersex clinical treatments during infancy or early childhood. But unfortunately, the rightsbased approach to guarantee intersex care in the United States has proven ineffective partly because state and federal policies and laws in this country do not match international and regional treaties on the rights to sexuality and sexual health Miller, Kismödi, et al., 2015) and the rights of children (Cohen et al., 2019;Ouellette, 2010). ...
Deeply rooted on human rights principles, there is a growing international agreement to prohibit non-consensual medical interventions to intersex persons. In contrast, medical protocols for intersex care in the United States are guided by clinical wisdom and guidelines that are not legally binding. But as the medical profession is called to respect and to champion the right to health within human rights principles, expert opinion in the United States has become unsettled when confronted with current standards of intersex care. In this study, we tracked the human rights arguments by international institutions that effectively impacted clinical standards for the care of intersex persons around the globe during this decade, and we studied the use of rhetoric by key policy stakeholders that seek to uphold intersex medical care in the United States to these international standards. We conclude that the medical establishment in the United States does not meet international standards of human rights as it enforces an outdated definition of 'sex'.
... Such rights are saved for her until adulthood since they are prone to violation before the child can effectively exercise them. Other scholars have adopted various versions of the child's right to an open future, as a constraint on parental autonomy in shaping one's children (Dworkin, 1982, p. 205;Buchanan et al., 2000, p. 175;Ouellette, 2010). Some versions (e.g., Buchanan et al. 's) are weaker than Feinberg's at times stricter account of a right to "a maximally open future" (Buchanan et al., 2000, p. 170). ...
This paper considers children’s rights with respect to genetic enhancement (GE). It is
focused on the futuristic prospect of postnatal GE, namely, genetic modifications, in vivo,
of actual existing individuals. More specifically, the paper examines whether, in a future
reality where pre- and postnatal human GE is safely and prevalently practiced, a child
would have a right to be genetically enhanced by her parents or guardians, as well as
the right not to be genetically enhanced. It is in fact the postnatal phase, inhabited by
persons of indisputable moral status, subject of rights against others, which makes the
child’s putative right (not) to be genetically enhanced a relevant and legitimate subject
of exploration. Since postnatal GE is a futuristic technology, an appropriate, concrete,
rights-discourse has not yet been developed. In this paper, I therefore attempt to initiate
such discourse, by identifying, through legal analysis, potential sources for the child’s right
to be genetically enhanced, and theorizing about its nature (derivative, or a newly created
independent right; positive or negative right). I begin by considering several (mostly) contemporary
candidate core rights, from which the child’s right to be genetically enhanced
could potentially derive; next, I consider the child’s right not to be genetically enhanced,
through ethical analysis; finally, I look into the merits of creating such a novel right of the
child. I conclude, that the direct translation of the child’s interests in being genetically
enhanced, into any kind of recognized positive or negative right – whether derivative or a
newly emerging independent right – is unlikely. As per the putative child’s right not to be
genetically enhanced postnatally, I determine that such a right could be recognized as
a relative right, balanced against parental autonomy in rearing and shaping one’s child.
... In fact, all of Adler's legal and ethical arguments ignore the legal right of parents to make medical decisions on behalf of their children, a fundamental right recognised by the us Constitution as well as many state constitutions and statutes (see for example, Parham v. J.R.(us, 1979)). The right encompasses decisions regarding treatment and prevention interventions and even decisions about some interventions that could be characterised as non-therapeutic (Ouellette, 2010). Recognition of this right presumes that parents will make decisions that are in the best interest of the child, and those decisions cannot be overridden by the government without compelling justifications that rise to the level of child neglect or abuse or a significant threat to public health. ...
We evaluate Peter Adler's challenge to the Centers for Disease Control and Prevention (cdc) draft recommendations on male circumcision (this issue, see pp. 237-262). The CDC advocates elective male circumcision (mc) to improve public health in the usa based on strong scientific evidence. In marked contrast to the cdc, Adler's criticisms depend on speculative claims and obfuscation of the scientific data. Adler's central argument that circumcision in infancy should be delayed to allow a boy to make up his own mind as an adult fails to appreciate that circumcision later in life is a more complex operation, entails higher risk, is more likely to involve general anaesthesia and presents financial, psychological and organisational barriers. These limitations are avoided by circumcision early in infancy, when it is convenient, safe, quick, low risk, usually involves local anaesthesia and provides benefits immediately. Benefits of male circumcision include: protection against: urinary tract infections that are ten times higher in uncircumcised infants; inflammatory skin conditions; other foreskin problems; sexually transmitted infections and genital cancers in the male and his female sexual partners. Circumcision during infancy is also associated with faster healing and improved cosmetic outcomes. Circumcision does not impair sexual function or pleasure. Some authorities regard the failure to offer circumcision as unethical, just as it would be unethical to fail to encourage paediatric vaccination. Since the benefits vastly outweigh the risks, each intervention is in the best interests of the child. In conclusion, Adler's criticisms of the cdc's evidence-based male circumcision policy are flawed scientifically, ethically and legally, and should be dismissed as endangering public health and individual well-being.
... Of course, the harm principle, too, is not without its critics (see, e.g., Ouellette, 2010;Pope, 2011;Van Howe, 2013). One problem with the harm principle is that it fails to specify the appropriate threshold for harm, which opens the door for interested parties to argue, for any intervention, X, that it is "not harmful enough" to warrant the placement of limitations on parental decision making (e.g., Earp, 2015b;Van Howe, 2013). ...
Hypospadias is a relatively common genital condition in which the urethral opening forms on the underside of the penis, as opposed to at the tip of the glans. Patients with hypospadias are typically referred for surgery during infancy or early childhood. Recent evidence, however, indicates that many individuals with hypospadias do not experience the functional or psychosocial difficulties that are commonly attributed to the condition, and that surgical intervention for hypospadias carries substantial risk of adverse outcomes. In this article, we review published outcomes data and conduct an in-depth analysis of the typical rationales for hypospadias surgery, taking into consideration both the potential benefits and harms of the procedure, as well as the existence of non-surgical alternatives. We argue, firstly, that most childhood surgeries for hypospadias are performed for anticipated future problems concerning function and cosmesis, rather than extant problems that serve to undermine the child's well-being. Secondly, we contend that the surgery can be safely performed after an age of consent without increasing the absolute risk of surgical complications to an ethically meaningful degree. We conclude that surgery for hypospadias should typically be performed only if requested by the affected individual, under conditions of informed consent.
... 67 Nonetheless, in the vast majority of cases, parents are empowered to consent to medical care on behalf of their children, limited only in extreme situations by neglect or abuse laws that may prevent them from denying necessary care or perhaps from imposing unnecessary treatments. 68 It is thus fair to say that parents routinely make decisions about medical care for their children that are medically indicated but not, strictly speaking, medically necessary or life-saving. 69 Parents can choose among reasonable medical options with respect to antibiotics, tonsillectomies, and other such interventions for relatively minor ailments. ...
Children have a constitutional right to bodily integrity. Courts do not hesitate to vindicate that right when children are abused by state actors. Moreover, in at least some cases, a child's right to bodily integrity applies within the family, giving the child the right to avoid unwanted physical intrusions regardless of the parents' wishes. Nonetheless, the scope of this right vis-à-vis the parents is unclear; the extent to which it applies beyond the narrow context of abortion and contraception has been almost entirely unexplored and untheorized. This Article is the first in the legal literature to analyze the constitutional right of minors to bodily integrity within the family by spanning traditionally disparate doctrinal categories such as abortion rights; corporal punishment; medical decisionmaking; and nontherapeutic physical interventions such as tattooing, piercing, and circumcision. However, the constitutional right of minors to bodily integrity raises complex philosophical questions concerning the proper relationship between family and state, as well as difficult doctrinal and theoretical issues concerning the ever-murky idea of state action. This Article canvasses those issues with the ultimate goal of delineating a constitutional right of bodily security and autonomy for children.
... The treatment of children starts with deference toward parental preferences. 19 Yet, parental rights are not absolute. In Prince v Massachusetts, a member of the Jehovah' s Witnesses had her 9-year-old niece selling newspapers in violation of state labor laws. ...
This article explores the use of the best interest standard in the context of third-party interventions in ongoing parent-child relationships. I start by examining the history of the best interest standard and show that it has had different meanings in different eras. I then address the nature of the family and the question of whether interests beyond those addressed in the child's best interest standard are a legitimate part of family decision-making. I conclude that ongoing families are entitled to at least a measure of deference in their decisions about their children. Third-party interventions, such as those of doctors or judges, should require something more than simply a difference of opinion about where the child's interests lie.
... With books by plastic surgeon authors coming out such as, The Safe and Sane Guide to Teenage Plastic Surgery (which vouches for surgeries to combat bullying, but also for cosmetic Although some studies have begun to examine the motivations and possible psychological effects this phenomenon may have on young children (Sarwer, Infield, and Crerand 2009) and a few studies have questioned the broad scope of authority that parents currently have to request surgeries for their children (one example was Asian blepharoplasty performed on a newly adopted child) (Gilbert 2009;Ouellette 2010), others have questioned whether it may be necessary to look into universal legal frameworks to regulate the practice of cosmetic surgery on minors (McHale 2012). Overall, the academic community should take note. ...
What is driving the globalization of cosmetic surgery? Using BRIC (Brazil, Russia, India, China) countries as a model, this master's thesis systematically identifies and analyzes (1) the origins of cosmetic surgery in historical, regional, and country-specific terms, and (2) examples of how cosmetic surgery has become normalized. As a result, clear patterns emerge in regards to: embedded power structures related to racism and war; the results of Western interests rapidly opening countries’ markets to high media and corporate influence—especially in the wake of political oppression and austerity; the exacerbation of pre-existing class, color, race, and gender prejudice by hyper-consumerism; the perception of the beauty industry and global beauty pageants as a gateway to the "modern" world's stage; and the practice of “Westernized” cosmetic surgery becoming synonymous with concepts of status, upward mobility, and a social transition to global citizenship. These overall patterns allowed for the subsequent analysis of a third key question: (3) Who ultimately benefits from mass-consumer cosmetic surgery? Following a comprehensive comparative analysis and a sustained theoretical framework concluding with a Foucauldian explanation of relationships of force, I argue that the globalization of cosmetic surgery is driven by pre-existing sociohistorical power structures that serve the status quo—benefitting exclusionary cultural, cosmetic, and corporate systems from the West (and those who run them), and thereby precluding authentic opportunities for individual enfranchisement via cosmetic surgery on a macro level. Furthermore, I argue that by constructing and labeling "modernity" in terms that benefit the status quo and reflect historical relationships of force, developed nations maintain hegemonic control in their own image; meaning that fast-developing countries must follow existing neoliberal consumer models if they want to enter the global stage—and look the part. Accordingly, the racist and bellicose discursive origins of cosmetic surgery are an inconvenient truth that "modern" cosmetic surgery culture seeks to ignore in order to self-perpetuate and evolve with the demands of capitalism. Recommendations for future study in this field include the industries of medical tourism, skin lightening products, and tissue harvesting, as well as an expanding market of cosmetic surgery for teens and children.
There is good evidence that height is socially and economically beneficial to males. Consider two parents with otherwise healthy sons. One wants to obtain medical treatment to change her son’s ultimate projected height from 150 (4′11′) to 160 cm (5′3″). The other would give similar medication to increase her son’s projected final height from 190 (6′3′) to 200 cm (6′7″). This chapter explores some of the theoretical and practical considerations in (1) using biomedical technology to change a characteristic of a child from socially disfavored to typical; or (2) to change a characteristic from excellent to outstanding (in terms of societal norms). Prospects are poor for changing norms themselves with regard to important features of interpersonal competition such as mating desirability or markers of social dominance. It is necessary to directly confront the question of when (if ever) it should be permissible to change the child’s body, or even the child’s genotype, to allow him to better succeed within his culture. This leads to interesting ways to frame problems that do not necessary lend themselves to definitive recommendations.
In our paper we present and analyze the case of Ashley X and the treatment she underwent as an example of invasive medical procedures performed on children. The case still remains controversial, and the treatment consisting of growth attenuation, hysterectomy, appendectomy and breast buds removal has both its opponents and proponents. In our paper we have a closer look at some arguments important for ethical analysis of Ashley’s case and treatment. First, for a better understanding of the case we present her medical condition. Secondly, we refer to the classification of therapeutic versus non-therapeutic medical procedures. Thirdly, we examine the issue of surrogate decisions for incompetent patients. Finally, we analyze two vital ethical arguments: a) the right to the open future and b) the criterion of best-interest.
There has been a marked increase in the active involvement of children and young people in social research. This move is underpinned by rights based arguments that children and young people should have a voice, and that this voice should be listened to. However, concerns have been raised about the appropriateness of children’s and young people’s rights and participation in research. This is primarily due to queries over whether they have enough capacity to enact the individual agency required to be rights holders and participate in research. In addition, a focus on their inherent vulnerability continues to be a key feature of research ethics protocols. In this paper I argue that both capacity and vulnerability should be seen as socially produced, meaning that the scope for capacity to be increased and vulnerability decreased also lies within the social. I draw from notions of relational autonomy or ‘associational presence’ to argue that what children and young people need to be active participants in research is the creation of spaces within which relational agency can be nurtured and sustained. Such techniques and values are found in participatory research approaches and can be used to create such emancipatory environments.
Positive law thus far has not recognized food diversity as a single and autonomous legal value that transcends its individual dimensions, nor has it prescribed systematic provisions for its general protection. This contribution sets forth the thesis that food diversity, in legal terms, must be considered a synthesis of multiple diversities, meaning, a “value system” where numerous legal values of primary legal status protected at the international, European and constitutional levels converge and are contained as a whole: the environment and biodiversity, local autonomy and territorial differentiation, tangible and intangible cultural landscape and heritage, human health, personal and religious freedom, and the family and its educational choices. The strengths of these basic values aggregate organically, conferring to food diversity, in the writer’s judgement, the highest position in the legal order especially given its close ties to the supreme value of life. Food, in fact, is noteworthy in its dimension as a “binder” that connects the different levels—the individual, the social and the ecological—of biological life. The reciprocal involvement between life and diversity, and between food and life, forcefully exposes the necessity for the safeguard of food diversity as a preconditional and overriding “value of values” that must be legally preserved in its qualitative integrity and passed on to future generations. From this perspective, should an irreconcilable conflict arise between food diversity and economic interests linked to the protection of competition, free enterprise and the market, and should balance not be possible, predominance must be given to the protection of food diversity from threats—deriving from socio-economic dynamics—that can lead to its depletion or disappearance, with a consequent regression of antagonistic interests.
Some governments, human rights organizations, intersex organizations, and doctors have called for a moratorium on genital and gonadal surgeries for infants born with atypical or ambiguous genitalia. Moratorium supporters believe that the surgeries carry physical and emotional risks, the psychosocial benefits of these procedures have not been proven, and the surgeries violate the patients׳ fundamental human rights if they are performed before these patients can provide informed consent. Given these calls for a moratorium, treatment teams must determine how to treat their patients and how to counsel their patients׳ parents. This article examines the treatment teams׳ ethical and legal responsibilities and provides advice for treatment teams to follow that will protect their patients and their practices.
A crucial contemporary dynamic around children and young people in the Global North is the multiple ways that have emerged to monitor their development, behaviour and character. In particular disabled children or children with unusual developmental patterns can find themselves surrounded by multiple practices through which they are examined. This rich book draws on a wide range of qualitative research to look at how disabled children have been cared for, treated and categorised. Narrative and longitudinal interviews with children and their families, along with stories and images they have produced and notes from observations of different spaces in their lives - medical consultation rooms, cafes and leisure centres, homes, classrooms and playgrounds amongst others - all make a contribution. Bringing this wealth of empirical data together with conceptual ideas from disability studies, sociology of the body, childhood studies, symbolic interactionism and feminist critical theory, the authors explore the multiple ways in which monitoring occurs within childhood disability and its social effects. Their discussion includes examining the dynamics of differentiation via medicine, social interaction, and embodiment and the multiple actors - including children and young people themselves - involved. The book also investigates the practices that differentiate children into different categories and what this means for notions of normality, integration, belonging and citizenship. Scrutinising the multiple forms of monitoring around disabled children and the consequences they generate for how we think about childhood and what is 'normal', this volume sits at the intersection of disability studies and childhood studies. © 2016 J. McLaughlin, E. Coleman- Fountain and E. Clavering. All rights reserved.
The term "intersex" evokes diverse images, typically of people who are both male and female or neither male nor female. Neither vision is accurate. The millions of people with an intersex condition, or a DSD (difference/disorder of sex development), are men and women whose sex chromosomes, gonads, or sex anatomy do not fit clearly into the male/female binary norm. Until recently, intersex conditions were shrouded in shame and secrecy; many adults were unaware that they had been born with an intersex condition and those who did know were advised to hide the truth. Current medical protocols and societal treatment of people with a DSD are based on false stereotypes about sex, gender, sexual orientation, gender identity, and disability, which create unique challenges to framing effective legal claims and building a strong cohesive movement. In "Intersexuality and the Law: Why Sex Matters," Professor Julie A. Greenberg examines the role that legal institutions can play in protecting the rights of people with an intersex condition. She also explores the relationship between the intersex movement and other social justice movements that have effectively used legal strategies to challenge similar discriminatory practices. In addition, she discusses the feasibility of forming effective alliances and developing mutually beneficial legal arguments with feminists, LGBT organizations, and disability rights advocates to eradicate the discrimination suffered by these marginalized groups.
In her article Creating Children with Disabilities: Parental Tort Liability for Preimplantation Genetic Interventions, http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1158631, Professor Kirsten Rabe Smolensky argues that children who were subject to preimplantation genetic manipulation should have the ability to sue their parents for damages when the parents "directly intervene in the child's DNA and consequently cause that child to suffer a disability which limits the child's right to an open future." This paper addresses the implications for people with disabilities of that argument. Specifically, it argues that limiting damages to cases in which a child is born with a disability unnecessarily and inaccurately devalues life with disability and leaves unprotected children whose DNA is shaped for traits other than disability at the request of their parents. It then suggests a disability-sensitive approach for delineating cognizable injury under which genetic modifications for disability are treated like other genetic modifications that shape a future child for cultural, aesthetic, or social reasons. The article is one of three articles responding to "Creating Children with Disabilities" in a symposium edition of the Hastings Law Journal. The first critique is by Glenn I. Cohen from Harvard Law School. Professor's Cohen's piece, "Intentional Diminishment, the Non-Identity Problem, and Legal Liability" (http://ssrn.com/abstract=1330504), argues that distinctions I draw on the basis of the Non-Identity Problem are flawed. He then discusses several other possible approaches to finding legal liability. Jaime S King, from Hastings Law School, writes the second critique, "Duty to the Unborn: A Response to Smolensky" (http://ssrn.com/abstract=1336375). In that article, Professor King agrees that parents making preimplantation reproductive decisions should act as reasonably prudent parents, but argues that a balancing test that considers both the benefits to children of growing up disabled and the additional risks of the reproductive technologies themselves should be applied. The article also argues that national regulation is a better social response to this problem than parental tort liability. The symposium concludes with a brief response to each of the three critiques. The response, "Parental Tort Liability for Direct Preimplantation Genetic Interventions: Technological Harms, the Social Model of Disability, and Questions of Identity" (http://ssrn.com/abstract=1295426) addresses a central argument from each of the three critiques.
Two of the most popular and controversial cosmetic procedures for adolescents are liposuction and breast implants. In this review article, the procedures are discussed. In addition, the physiological and psychological reasons to delay these procedures, including concerns about body dysmorphic disorder and research findings regarding changes in teenagers' body image as they mature, are described. The lack of persuasive empirical research on the mental health benefits of plastic surgery for teenagers is highlighted. Finally, the long-term financial and health implications of implanted medical devices with a limited lifespan are presented. Adolescent medicine providers need to be involved in improving informed decision making for these procedures, aware of the absence of data on the health and mental health risks and benefits of these surgeries for teenagers, and understand the limitations on teenagers' abilities to evaluate risks.
This article queries whether the law inappropriately deprives adolescents of the right to participate in and potentially direct their own healthcare. I argue that the broad withholding of healthcare decision-making rights from adolescents is morally unfounded and practically unnecessary and that the age marker dividing childhood from adulthood for purposes of healthcare decision-making has been set too high. Evidence of adolescent cognitive abilities requires a re-imagining of the appropriate balance between over and under protection of young people in the law. In choosing the chronological age marker of eighteen, the law denies rights to fourteen to seventeen year old adolescents who are capable of exercising such rights in a thoughtful fashion.Part I provides an overview of the existing healthcare-related legal landscape for young people including state statutes providing limited rights to healthcare decision-making in a small universe of cases. This part describes the ways in which the law reinforces outdated notions of broad adolescent incompetence while also carving out limited spaces in which adolescents may engage in autonomous decision-making.Part II discusses the limitations of the current system of state laws and suggests what might be gained from more comprehensive thinking about and legislating for adolescents. This part details the ways in which the lack of a legally enforceable right to consent to healthcare ignores the realities of family life, leads to a lack of family communication in some circumstances, and discourages the creation of optimal healthcare provider/patient relationships thus compromising the quality of care provided to adolescent patients. Though there are certainly benefits conferred on young people by the current system, the system's flaws outweigh its strengths.Part III proposes a shift in the existing hodgepodge of laws providing limited healthcare decision-making power for adolescents. I articulate explicit and implicit goals of healthcare emancipation statutes and offer a proposal for better achieving both types of goals that rests upon a model of shared healthcare decision-making powers for parents and adolescents. I suggest that an appropriate response to the shifting parameters of adolescence and adulthood and the increasing scientific evidence of the fluidity of these categories is a reduction in the age of consent for healthcare decision-making to fourteen from the usual eighteen, thus allowing young people to share decision-making power with their parents or other adult caretakers in most circumstances. I envision a regime in which the baseline assumption is that parents and adolescent children between the ages of fourteen and seventeen share decision-making responsibility for most healthcare decisions. This regime is premised upon the idea that adolescents have the right to know about their own healthcare status and have the capacity to meaningfully participate in decisions about their own healthcare even in the face of parental conflicts.Part IV provides justification for imposing the shared decision-making model and details why making this change through a rights bearing framework is appropriate as well as why such a change will accrue to the benefit of adolescents and their families.
Caring for children with profound developmental disabilities can be difficult and demanding. For nonambulatory children with severe, combined neurologic and cognitive impairment, all the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood. Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size. If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home. Treatment of the child with high-dose estrogen, initiated at an early age, could provide this option. High-dose estrogen both inhibits growth and rapidly advances maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment. We present a case report and discuss the medical and ethical considerations of such an intervention strategy. We suggest that after proper screening and informed consent, growth-attenuation therapy should be a therapeutic option available to these children should their parents request it.
The use of GH in short normal children remains a controversial issue as physicians and parents alike are under continuing pressure to identify and to treat such children. Before asking who might respond to growth-promoting therapy, we should first ask who needs it. Rational intervention assumes some abnormality, physical or psychological, that can be corrected. Where short stature is the result of GH deficiency, the case for intervention is clear and uncontroversial. Where there is no clear deficiency, treatment can be regarded neither as replacement therapy, nor as corrective, but simply cosmetic. However, there might be a case for therapy if there were clear evidence of an association between short stature and psychosocial dysfunction. The common perception that short stature is an inevitable handicap has been founded on unreliable evidence, largely clinic-based studies, where children experiencing the greatest difficulties are likely to be found. Such reports, unless challenged, can only lead to an increasing demand for treatment, both from and for those who were previously unconcerned. The Wessex Growth Study recruited an unselected cohort of short normal children, not from the clinic, but from the community at large, and has challenged the widely held belief that short stature is an inevitable disadvantage. The progress of these children, followed over some 13 years, has given little cause for concern. Indeed, this study, and others subsequently, has demonstrated the normality of the psychosocial functioning of the short normal child.
By emphasizing parental rights, the law allows parents to choose surgery to modify a child for aesthetic, cultural, or social reasons unrelated to a physical or psychological need of the child. This paper explores the case of an adoptive parent who chose cosmetic surgery to open the eyes of his Asian daughter. The paper identifies the potential harm done to a child when a parent uses surgery to shape her body and the ways in which current law protects parental choice at the expense of children's rights. It then suggests that by conceptualizing the role of parents as trustees, the law would better protect children while maintaining parental choice in medically necessary cases.
This Note discusses the recent controversy surrounding a six-year-old girl named Ashley, whose parents chose to purposefully stunt her growth and remove her reproductive organs for nonmedical reasons. A federal investigation determined that Ashley's rights had been violated because doctors performed the procedure, now referred to as the "Ashley Treatment," without first obtaining a court order. However, the investigation did not make any conclusions regarding whether the "Ashley Treatment" could present a legally permissible treatment option in the future. After discussing the constitutional rights that the "Ashley Treatment" implicates and the current legal standards in place, this Note examines how courts have applied these legal standards to cases involving extreme requests. Drawing upon legal commentators, this Note concludes that a court could approve a request for the "Ashley Treatment" in appropriate and limited cases where the parents have presented clear and convincing evidence before a court that the benefits that the "Ashley Treatment" would provide to the child and her family outweigh the risks associated with the procedure. This Note argues that those benefits may include extrinsic considerations, but courts should remain cautious when considering such evidence and be sure that the evidence as a whole supports their conclusions.
Plastic facial surgery is being carried out on children with Down syndrome with the objective of improving these children's physical, personal, and social functioning. This study investigated the effect of such surgery on parents' perceptions, both of the current status of their children's functioning and of changes in this functioning. Perceptions of parents of children who had undergone this surgery in Israel in the years 1982 and 1983 were compared with perceptions of parents of children who had not undergone the operation. This comparison produced little evidence for the positive impact of the surgery on parents' perceptions of their children's physical, personal, and social functioning.
Increased availability of growth hormone (GH) because of increased production using recombinant DNA technology has led to increased demand. Many children who do not have classic GH deficiency may respond to GH therapy. These observations require rethinking of the medical indications for GH therapy, and raise two central ethical questions: (1) Is it justified to discriminate on the basis of GH deficiency? (2) Whatever the indication for GH treatment, at what height should GH therapy be considered an entitlement? We argue, first, that GH responsiveness, not GH deficiency, should be the criterion for GH treatment, and that prior arguments emphasizing GH deficiency are based on vague or faulty notions of disease, handicap, or potential. Second, we argue that children who are handicapped (arbitrarily defined as including those whose height is below the 1st percentile) and GH responsive are entitled to treatment. Children above that height, whether GH deficient or not, may permissibly be treated, but there is no societal obligation to do so. Such an approach would reduce, though not eliminate, some of the more severe burdens of short stature without aggravating the pernicious effects of "heightism" in American society.
The author discusses the social influences that gave rise to the presumption in favor of children's participation in research and emphasizes the need for an ethical framework to guide decision-making in this context. Specifically, the author proposes a framework of child-centered bioethics that integrates the core bioethics principles of beneficence and autonomy with an assessment of children's needs and interests. Finally, the author articulates recommendations regarding mature minors and institutional review boards consistent with this framework in order to resolve the difficult ethical issues posed by including children of all ages in clinical drug trials.
In August 2001, the Maryland Court of Appeals harshly criticized the Kennedy Krieger Institute of Johns Hopkins University for knowingly exposing poor children to lead-based paint. The court’s decision made national news, and is worth examining because it raises several very important issues for research ethics.
The research conducted by the Institute was an attempt to understand how successful different lead abatement programs were in reducing continued lead exposure to children. Previously, Julian Chisolm and Mark Farfel, of John Hopkins University, had disclosed the dangers of traditional dust-generating deleading practices. In the current study, Dr. Farfel and colleagues sought to document the longevity of various lead-based paint abatement strategies.
In Grimes v. Kennedy Krieger Institute , the Maryland Court of Appeals (Maryland’s highest court) considered whether it is possible for investigators or research entities to have a special relationship with subjects, thereby creating a duty of care that could, if breached, give rise to an action in negligence. The research under review, the Lead Abatement and Repair & Maintenance Study, was conducted from 1993 to 1996 by investigators at the Kennedy Krieger Institute (KKI), an affiliate of Johns Hopkins University.
After briefly discussing the case at the center of this ruling, I consider how ambiguities within the federal research regulations at 45 C.F.R. § 46 contribute to disagreements among reasonable and informed people of good will about what studies should be approved. I argue that Grimes may be understood as placing restrictions on how these regulations may be interpreted and used.
The authors challenge the practice of gender assignment surgeries of infants born with ambiguous genitalia and other differences of sex development (intersex conditions). They assert that the child's right to an open future should be preserved.
Upper blepharoplasty in the Asian eye is a challenging procedure requiring careful and considered preoperative preparation and meticulous attention to detail during the operative procedure. Anatomical differences as compared with the Caucasian eyelid must be appreciated and respected. Upper blepharoplasty is a flexible operation allowing variations in the level of the palpebral fold, depth of the palpebral sulcus, and disposition of the epicanthus, all of which combine to allow significant aesthetic differences in the appearance of the surgically transformed eyelids. The preoperative desires of each patient regarding the type eyelid transformation requested must be carefully elicited. At the present time, most patients desire retention of at least some Asian characteristics rather than frank Westernization. Each patient should be allowed to scrutinize pre- and postoperative photographs of various types of double eyelid procedures as an aid in selecting the type of eyelid desired. Because postoperative asymmetry is the most frequent cause of dissatisfaction, it is especially important to note and document pre-existing asymmetry and to execute every step in the operation with symmetry as a primary goal. Although blepharoplasty in Asians is a variation of standard supratarsal fixation blepharoplasty, surgery of the Asian eyelid presents a unique and novel challenge even for the surgeon who is experienced in Caucasian blepharoplasty. As in other areas of cosmetic surgery, the best way to avoid unsatisfactory results is to identify potential problem situations preoperatively. In Asian blepharoplasty, red flags include preoperative asymmetry, patients who have undergone previous blepharoplasty, thick sebaceous skin, and the presence of a large epicanthal fold. Thorough understanding of anatomy, thoughtful and considered preoperative planning, and meticulous attention to detail during the operative procedure comprise a road map to success in Asian upper blepharoplasty.
On January 7, 2003, Sydney Cowan, a healthy six-year-old girl, underwent skin harvesting, specifically to be used for her badly burned identical twin sister, Jennifer. A day earlier, the Probate Court of Jefferson County, Alabama, after considering whether a healthy minor twin sibling could serve as a skin donor for her severely burned sister, authorized parental consent to the surgery. More accurately, the court addressed whether Sydney could undergo surgical procedures that provided her with no physical benefit, but, rather, resulted in harmful effects, such as acute postoperative pain, permanent residua, and potential long-term emotional and psychological dysfunction.
Although the transplants were extraordinarily successful, and the newspaper article depicted Sydney's participation in heroic terms, the harvesting of Sydney's skin was ethically problematic. Specifically, I assert that the use of an incompetent minor as a skin transplant donor, even if an identical twin, is not justified unless the transplant will save the recipient's life.
The millennium has ushered in a new era of oversight for pediatric research, with renewed moral and legal attention to the upper thresholds of potential harms to which children may be exposed in studies. Watershed events discussed include: First, the deaths of two research subjects, allegedly due to insufficient oversight by the investigators and their institutional review boards. Second, the courts expressed concerns about research policies for incompetent persons or children in two cases, T.D. v. N.Y. and Grimes v. Kennedy Krieger Institute, and reinforcement of the principle that the best interest standard must be used for incompetent persons even in research. Third, the Best Pharmaceutical for Children Act and the Pediatric Rule created incentives as well as uncertainty among Institutional Review Boards and researchers about conducting pediatric studies. Fourth, the Office of Human Research Protection signaled the start of more rigorous oversight with its public rebuke and suspension of a National Institute of Child Health and Human Development pediatric obesity study. Failure to clarify the meaning of the pediatric regulations has sometimes misled generally risk-averse institutions and dedicated investigators about what is permissible.
“When I use a word,” Humpty Dumpty said, in a rather scornful tone, “it means just what I choose it to mean, neither more nor less.”
”The question is,” said Alice, “whether you can make words mean so many different things.”
”The question is,” said Humpty Dumpty, “which is to be master - that's all.”
—Lewis Carroll
“Sex” is a complex thing. The word conjures up many images according to how it is used. When narrowed to the context of the law, however, a person’s sex can be broken down into three primary categories: biological sex, common law sex, and legal sex.
Biological sex has traditionally been determined according to the presence or absence of genitals and gonads (phenotype), and the configuration of the sex chromosomes (karyotype).
Since the mid- to late 1990s, the scientific and medical research community has sought to increase its access to healthy children for research protocols that involve harm or a risk of harm. This move reverses longstanding policy within that community generally to exclude healthy children from such protocols on the grounds that the research as to them is nontherapeutic, that they are particularly vulnerable to research-related abuses, and that they are unable themselves to give informed consent to their participation. The research community’s new posture has been supported by prominent pediatric bioethicists who have argued that unless healthy children are included as research subjects in harmful or risky research, the pediatric population will continue to suffer relative to the adult population in the extent to which it benefits from modern advances in science and medicine. In their view, it is possible for the research community to self-administer a rule that strikes a balance between protecting healthy children from research-related abuses and allowing their inclusion in cutting-edge pediatric research. In this scheme, parental consent is central to the research community’s claims about child protection.
This Article explores the flaws inherent in this ethics of pediatric research. Specifically, it challenges the view from ethics that the law permits parents to consent to their children’s inclusion in harmful or risky research to the extent that related invasions would meet legal maltreatment standards. More broadly, it challenges the movement to increase access to healthy children for harmful and risky research on the ground that it risks two important regressions: First, in its willingness to risk harm to individual children in the interests of the group, it threatens the progress the law has made in its development of the concept of the child as an individual worthy of respect in his or her own right, a concept that imagines parents as fiduciaries and that includes strong protections against invasions of bodily integrity. Second, in its failure to assure that the burdens of nontherapeutic research are not placed disproportionately on children of lower socioeconomic and minority status, it violates the antidiscrimination principle, which has only begun to make good on its promise of equal treatment for all children. Ultimately, this Article argues that harmonization of the rules governing pediatric research with the law of child protection and parents’ consent authority is the best way to assure that children are protected in the research setting in these respects and to the same extent they are otherwise in the society.