Adolescent Medical Decision Making and the Law of the Horse

Legal and ethical regimes relating to adolescent medical decision making resemble what Judge Frank H. Easterbrook derisively called “the Law of the Horse”: Many laws deal with horses, he wrote, but there is no such field as “horse law.” Similarly, even though the United States has juvenile and family courts, as well as pediatric and adolescent medical departments, there is not a distinct field of “adolescent medical decision-making law” or ethics; there are just many disparate policies that implicate or impinge upon decisions made by adolescents. These include state laws ranging from those that permit minors to seek treatment for substance misuse or mental illness without parental consent to those that prohibit tattoo parlors from serving minors even with parental consent. They also include ethical norms that inform hospital and clinic policies about whether minors may refuse life-extending medical treatment over their parents’ objections or whether parents may compel their children to have cosmetic procedures without the child’s agreement. At first glance, this range of policies might seem less coherent and productive to mine as a unified body of legal and ethical norms than even “horse law.” But there is a deeper connection between adolescent decision-making law and ethics and “the Law of the Horse,” one that suggests that adolescent decision making may not be the disparate collection of regimes that it appears to be. The legal and ethical norms relating to adolescent decision making illuminate more general issues about how legal and ethical doctrines incorporate scientific information about human cognition and development. Since the existence of separate laws and ethical norms for adolescents and adults is premised on actual differences between them, some kind of consensus about the nature of those differences ought to unify the “law and ethics of adolescent medical decision making.” But it does not. By working through examples of how legal and ethical doctrines interact with issues of adolescent decision making, we can elucidate a set of general questions about doctrinal reliance, or lack thereof, on neuroscientific evidence about human development and behavior. This piece serves as the Introduction to a symposium issue of the Journal of Health Care Law & Policy, which presents a collection of essays that coalesce around the regulation of adolescent decision making in light of current research on brain development

Just Compensation: A No-Fault Proposal for Research-Related Injuries

Biomedical research, no matter how well designed and ethically conducted, carries uncertainties and exposes participants to risk of injury. Research injuries can range from the relatively minor to those that result in hospitalization, permanent disability, or even death. Participants might also suffer a range of economic harms related to their injuries. Unlike the vast majority of developed countries, which have implemented no-fault compensation systems, the United States continues to rely on the tort system to compensate injured research participants—an approach that is no longer morally defensible. Despite decades of US advisory panels advocating for no-fault compensation, little progress has been made. Accordingly, this article proposes a novel and necessary no-fault compensation system, grounded in the ethical notion of compensatory justice. This first-of-its-kind concrete proposal aims to treat like cases alike, offer fair compensation, and disburse compensation with maximum efficiency and minimum administrative cost. It also harmonizes national and international approaches—an increasingly important goal as research becomes more globalized, multi-site trials grow in number, and institutions and sponsors in the United States move to single-IRB review

Respect and Dignity: A Conceptual Model for Patients in the Intensive Care Unit

Although the concept of dignity is commonly invoked in clinical care, there is not widespread agreement—in either the academic literature or in everyday clinical conversations—about what dignity means. Without a framework for understanding dignity, it is difficult to determine what threatens patients’ dignity and, conversely, how to honor commitments to protect and promote it. This article aims to change that by offering the first conceptual model of dignity for patients in the intensive care unit. The conceptual model we present is based on the notion that there are three sources of patients’ dignity—their shared humanity, personal narratives, and autonomy—each of which independently warrants respect. The article describes each source of dignity and draws on examples to illustrate how clinician attitudes, actions, and behaviors can either contribute to, or detract from, expressions of respect for patient dignity

Deciphering Dignity

This commentary draws on dignity’s usage in law, ethics, and public policy to contemplate a narrow question about what the concept of dignity means in debates about human enhancement technologies. In particular, it considers arguments made by Fabrice Jotterand and other bioethicists who aim to repudiate the transhumanist claim that individuals can enhance their dignity through technological modification. The trouble with the positions on both sides of this debate is that it is extremely difficult to make normative comparisons about human and post-human dignity without first infusing dignity with particular metaphysical assumptions. To that end, the commentary offers a brief taxonomy of dignity to illustrate the various meanings of dignity that animate the debate between Jotterand and the transhumanists, and it demonstrates how the taxonomy can clarify and lend moral salience to the issues at hand

Book Review: Human Dignity and Bioethics: Essays Commissioned by the President\u27s Council on Bioethics

The President’s Council on Bioethics frequently invokes -- but never defines -- the notion of human dignity in its reports on caregiving, stem-cell research, cloning, assisted reproduction, and biomedical enhancement. This article argues that the Council employs the language of dignity so loosely in its policy recommendations that the word is often nothing more than a rhetorical trump card to reject policies at odds with the Bush administration’s perspective. This article examines how the Council uses the word dignity; explores competing philosophical, theological, and political understandings of the word; and suggests ways in which a more productive dialogue about dignity\u27s meaning can proceed

Revising the Common Rule: Prospects and Challenges

The annual Bioethics and Law Roundtable, jointly sponsored by the Law & Health Care Program at the University of Maryland Francis King Carey School of Law and the Johns Hopkins Berman Institute of Bioethics, convened in April 2012 to address Human Subjects Research Regulations: Proposals for Reform. This paper serves as the introduction to the seven papers presented at the symposium that discuss the prospects and challenges of revising the Common Rule

Moral Gridlock: Conceptual Barriers to No-Fault Compensation for Injured Research Subjects

The federal regulations that govern biomedical research, most notably those enshrined in the Common Rule, express a protectionist ethos aimed at safeguarding subjects of human experimentation from the potential harms of research participation. In at least one critical way, however, the regulations have always fallen short of this promise: if a subject suffers a research-related injury, then neither the investigator nor the sponsor has any legal obligation under the regulations to care for or compensate the subject. Because very few subjects with research-related injuries can meet the financial or evidentiary requirements associated with a successful legal claim to recover the costs associated with their injuries, most injured subjects must shoulder the burden of those expenses alone. For 40 years, national advisory panels have concluded that this result is out of step with the Common Rule\u27s otherwise protectionist promise. When the Department of Health and Human Services released an Advance Notice of Proposed Rulemaking (ANPRM) in 2011, suggesting potential changes to the Common Rule, the time seemed ripe to address research-related injuries. The ANPRM, however, makes no mention of compensation for research-related injuries, and the federal government once again seems poised to stop short of addressing what has arguably become the most longstanding, frequent, and consistent plea for regulatory reform of research: protections for injured subjects. This article asks why, despite decades of federal-level panels recommending no-fault compensation for research-related injuries, the United States has so strongly resisted change. I suggest that a central reason for our current impasse is that, despite consensus among federal advisory committees that there is an obligation to compensate injured subjects, the committees have not coalesced around a moral justification for that duty. Although multiple justifications can support and even strengthen a single ethical obligation, the reverse has occurred in this context. I demonstrate that the committees\u27 articulation of multiple ethical principles—including humanitarianism, professional beneficence, and compensatory justice—results in incongruent obligations that favor different kinds of compensation systems. This outcome, which I call “moral gridlock,” makes it extremely difficult to determine what kind of compensation scheme to implement. Recognizing that each moral argument for compensation creates a slightly different trajectory is, however, an important first step in moving toward a more systematic approach to compensating injured research subjects