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Abstract: The article focuses on pre-implantation genetic diagnosis ("PGD"), a technology that allows health care providers and potential parents to screen embryos for a range of characteristics prior to implanting them in a woman's uterus. Many potential parents use the technology to screen out life-threatening diseases, but many have expressed concerns about the technology's potential use to screen for benign characteristics such as sex. Recognizing the potential for future regulation, this article focuses on three major topics 1) the potential for legal regulation of pre-implantation genetic diagnosis; 2) the relationship between such future regulation and the existing legal landscape attendant to parenting, procreation, and pregnancy; 3) and the specific consequences for women of legal incursion into PGD decision-making.
The article begins by describing the medical landscape relevant to modern pregnancies in the United States. I then discuss the myriad ways in which existing law impacts procreative and parental decision-making and the ways in which the public nature of procreation and pregnancy make it a time ripe for regulation that is deeper and more intimate than is often the case when the law regulates non-pregnant bodies. The article describes motherhood, unlike fatherhood, as deeply contested territory in which many women struggle to conform to their own definitions of good motherhood and avoid the dreaded label of bad mother. It also describes how the law participates in a process of naming some women as bad mothers and questioning and at times denying their right to parent. Ultimately, this portion of the article emphasizes the disparate gender impact of much reproductive regulation and focuses on the vagaries of restrictive abortion regulation to highlight the link between how states have chosen to regulate abortion and future attempts to regulate PGD.
In the next section, the article imagines and contemplates the constitutionality of future state regulation of PGD, specifically a potential ban on the technology or limiting its use to disease prevention. I conclude that some forms of regulation would likely pass constitutional muster. Finally, the article imagines the consequences of future PGD legislation for women and explains how many legislative choices, including bans or limitations on the use of PGD, will negatively impact many women in part by continuing attempts to delineate categories of good and bad motherhood. The article concludes that regulation of PGD is an idea that should not yet be put into practice.
Abstract: Recognizing the complicated relationship between potential patients and fertility doctors, this Article seeks to provide some clarity and guidance to those facing the daunting task of accepting or rejecting patients on the basis of their disability status. Part I describes the various ways that physicians providing fertility services decide to accept or reject patients, and highlights how certain characteristics, such as disability, can lead to discrimination. Part II explains why it is appropriate to evaluate discrimination in the fertility context as impacting an interest in procreation, rather than an interest in parenting one’s biological children or in seeking to adopt children. Part III evaluates the potential difficulties that a disabled person might face when attempting to prove unlawful discrimination under the Americans with Disabilities Act (ADA). Using the examples of an HIV-positive woman and a quadriplegic woman, the Section hypothesizes how such litigants would prove the applicability of the statute and explains why the ADA should be interpreted in a way that protects people with these substantial disabilities from being denied access to treatment by fertility doctors. Finally, Part IV mines the theoretical complications of risks that could warrant denying access to fertility care to women living with HIV or quadriplegia. This Section describes the difference between direct and indirect risks to the patient or the fetus and argues that indirect risk, summarized as the risk of bad parenting, is most often too amorphous to satisfy the ADA inquiry or ethical standards.
Abstract: 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.
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