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Table of Contents
Table Of Contents
Letter From the Editor
Letter From The Editor

While the Journal of Law, Medicine & Ethics is the most important and most consistent feature of membership in the American Society of Law, Medicine & Ethics, it is never a bad time to remind readers about all of the other great programs sponsored by ASLME. First is our signature conference, Health Law Professors (HLP), which is now in its 37th year. This year HLP will be held at the University of California's Hastings College of the Law in San Francisco from June 5-7. The Health Law Professors conference is ASLME's oldest and best-loved conference; it is a once-a-year chance for many old friends and colleagues to meet and catch up. We hope to see you there - whether you are an old friend or a new one.
Introduction: From the Right to Know to the Right Not to Know
Bartha Maria Knoppers - [PDF]

Respect for the autonomy of research participants recognizes that all individuals have the right to make their own decisions. Enshrined in the ethical and legal norms governing research since the Nuremberg Code of 1947, increasingly, it has taken the form of the right to know the results and incidental findings produced by whole genome sequencing (WGS). Less discussed but equally tied in with genetic research is the right not to know. In the clinical setting, physicians traditionally had the deontological "therapeutic privilege" to withhold information deemed to be too difficult for patients to handle. However, along with the emphasis on autonomy, and in reaction to the expansion of predictive genetic testing in the 1990s, we will see that the right not to know was codified in various international (I) and national (II) normative instruments on genetic research before finding its way into more explicit professional guidance documents.
Symposium Articles
Defining the Scope of Public Engagement: Examining the "Right Not to Know" in Public Health Genomics
Clarissa Allen, Karine Senecal, and Denise Avard - [PDF]

While the realm of bioethics has traditionally focused on the rights of the individual and held autonomy as a defining principle, public health ethics has at its core a commitment to the promotion of the common good. While these two domains may at times conflict, concepts arising in one may also be informative for concepts arising in the other. One example of this is the concept of a "right not to know." Recent debate suggests that just as there is a "right to know" information about one's genetic status, there is a parallel "right not to know" when it comes to genetic information that if communicated, could be detrimental to an individual's social or psychological well-being. As new genetic technologies continue to change the nature of genetic testing and screening, it is crucial that normative frameworks to guide and assess genetic public health initiatives be developed. In this context, the question of whether a "right not to know" may also be said to exist for populations on a public health level merits attention.
Is There a Right Time to Know? The Right Not to Know and Genetic Testing in Children
Pascal Borry, Mahsa Shabani, and Heidi Carmen Howard - [PDF]

In the last few decades, great progress has been made in both genetic and genomic research. The development of the Human Genome Project has increased our knowledge of the genetic basis of diseases and has given a tremendous momentum to the development of new technologies that make widespread genetic testing possible and has increased the availability of previously inaccessible genetic information. Two examples of this exponential evolution are the increasing implementation of next-generation sequencing technologies in the clinical context and the expanding commercial offer of genetic tests directly-to-consumers.
Autonomy, the Right Not to Know, and the Right to Know Personal Research Results: What Rights Are There, and Who Should Decide about Exceptions?
Gert Helgesson - [PDF]

Bioethicists have for quite some time discussed the right to know and the right not to know personal health information, such as genetic information acquired in health care and incidental health-related findings in research. Several international ethical guidelines explicitly defend these rights.
The Right Not to Know and the Duty to Tell: The Case of Relatives
Niklas Juth - [PDF]

This text is about obtaining and sharing genetic information when there is a potential conflict of interests between patients and their families and relatives. The patient or, in this text, the "index-person," is someone who is considering obtaining or already has obtained genetic information about herself through genetic testing.
Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications
Graeme Laurie - [PDF]

The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in large part by the rise and rise of the importance of personal autonomy in health care ethics, and by domestic and international health law. The right not to know has been acknowledged in at least two important international legal instruments. For example, the UNESCO Universal Declaration on the Human Genome and Human Rights (1997), Article 5c provides: "The right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected." Similarly, the Council of Europe Oviedo Convention on Human Rights and Biomedicine (1997), Article 10(2) states: "Everyone is entitled to know any information collected about his health. However, the wishes of an individual not to be so informed shall be observed."
The Public Health Workforce and Willingness to Respond to Emergencies: A 50-State Analysis of Potentially Influential Laws
Lainie Rutkow, Jon S. Vernick, Maxim Gakh, Jennifer Siegel, Carol B. Thompson, and Daniel J. Barnett - [PDF]

Law plays a critical role in all stages of a public health emergency, including planning, response, and recovery. Public health emergencies introduce health concerns at the population level through, for example, the emergence of a novel infectious disease. In the United States, at the federal, state, and local levels, laws provide an infrastructure for public health emergency preparedness and response efforts: they grant the government the ability to officially declare an emergency, authorize responders to act, and facilitate interjurisdictional coordination. Law is perhaps most visible during an emergency when the president or a state's governor issues a disaster declaration establishing the temporal and geographic parameters for the response and making financial and other resources available. This legal authority has increasingly been used during the last decade. For example, the number of federally declared disasters and emergencies rose from an average of 74 declarations per year in the 1990s to an average of 137 declarations per year in the 2000s.
Nonbinding Legal Instruments in Governance for Global Health: Lessons from the Global AIDS Reporting Mechanism
Allyn Taylor, Tobias Alfven, Daniel Hougendobler, and Kent Buse - [PDF]

In recent debates surrounding World Health Organization (WHO) reform, international lawmaking has received unprecedented attention as a future priority function of the Organization. Although WHO's constitutional lawmaking authority was historically neglected and even resisted by WHO and its Member States until the adoption of its first treaty a decade ago, the widespread consensus in favor of a central role for lawmaking in visions of a reformed WHO reflects the crystallization of contemporary approaches to global health governance. Today it is widely recognized that the trends toward globalization that have restricted the capacity of sovereign states to protect health through unilateral action alone have made innovative mechanisms to promote global cooperation and coordination, including international lawmaking, an essential component of governance of public health. The dynamics of globalization have thus not only had an impact on global health, but also the structure of international relations and the architecture of international health cooperation through WHO.
The "Permanent" Patient Problem
Courtenay R. Bruce and Mary A. Majumder - [PDF]

Patients who enter the health care system for acute care may become "permanent" patients of the hospital when a lack of resources precludes discharge to the next level of post-acute care. The care of these patients contributes to the rising costs of health care and will remain largely unaffected by the Affordable Care Act. For example, some resources may be available for treatment of undocumented persons, but Medicaid enrollment is unavailable for this population. Even where patients have access to Medicaid, it takes up to three months between applying for and actually receiving Medicaid benefits. During that time, patients may be ready for hospital discharge. However, post-acute care facilities have no financial incentive or legal obligation to accept patients with no insurance or only pending Medicaid coverage.
Care Coordination and the Expansion of Nursing Scopes of Practice
Y. Tony Yang and Mark R. Meiners - [PDF]

Recent developments in the health care industry have precipitated a new wave of interest in expanding the scope of practice for nursing. This is because the Patient Protection and Affordable Care Act (ACA), broadly designed to increase access to health insurance, will inevitably result in increased demand for primary care providers. And with compensation for primary care physicians already lagging far behind that of specialists, the role of nurse practitioners is once again receiving increased attention as a viable means by which to ease the pressure for access to health care.
Currents in Contemporary Bioethics: Tarasoff Duties after Newtown
Mark A. Rothstein - [PDF]

After recent tragedies involving mass murders on a college campus in Virginia, an Army base in Texas, a congressional constituent event at a shopping center in Arizona, and a movie theater in Colorado, one might have assumed the public had become numb to horrendous and senseless acts of killing. If so, one would have been wrong. The public was not prepared for the brutal and cold-blooded murder of 20 first-grade school children and six teachers and staff at Sandy Hook Elementary School in Newtown, Connecticut, on December 14, 2012.
Public's Health
A Proposed Ban on the Sale to and Possession of Caloric Sweetened Beverages by Minors in Public
James G. Hodge, Jr., Leila Barraza, Susan Russo, Kellie Nelson, and Greg Measer - [PDF]

Obesity is the definitive epidemic of the modern era in the United States. Its well-documented public health impacts, especially related to children and adolescents, are horrific. Nearly one-third of American minors are overweight; over 50% of them are obese. Already, these kids suffer from multiple adverse physical and mental health conditions. Sadly, absent serious communal and individual interventions, their lives may be cut short compared to their own parents' life expectancy. While recent surveillance suggests childhood obesity may be trending down slightly in some populations, public health experts remain concerned about the threat obesity poses to the health of America's youth.