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Contents - JLME - 2013 Volume 41: 4
Table of Contents
  1. Table Of Contents
Letter From The Editor
  1. Letter From The Editor
Introduction
  1. Introduction
Symposium Articles
  1. Is Inclusive Education a Human Right?
  2. Disability and Capability: Exploring the Usefulness of Martha Nussbaum's Capabilities Approach for the UN Disability Rights Convention
  3. Human Rights, Civil Rights: Prescribing Disability Discrimination Prevention in Packaging Essential Health Benefits
  4. Supported Decision- Making and Personal Autonomy for Persons with Intellectual Disabilities: Article 12 of the UN Convention on the Rights of Persons with Disabilities
  5. Expanding the Horizons of Disability Law in India: A Study from a Human Rights Perspective
  6. Disability, "Being Unhealthy," and Rights to Health
  7. Subversive Subjects: Rule-Breaking and Deception in Clinical Trials
Independent Articles
  1. The Ethics of Intellectual Property Rights in an Era of Globalization
  2. Supporting Second Victims of Patient Safety Events: Shouldn't These Communications Be Covered by Legal Privilege?
  3. Another Look at the Legal and Ethical Consequences of Pharmacological Memory Dampening: The Case of Sexual Assault
  4. The Right to Language
  5. Adherence to the Request Criterion in Jurisdictions Where Assisted Dying Is Lawful? A Review of the Criteria and Evidence in the Netherlands, Belgium, Oregon, and Switzerland
Columns
  1. Currents in Contemporary Bioethics: Predictive Genetic Testing of Children and the Role of the Best Interest Standard
  2. Teaching Health Law: A Place for All at the Global Health Table: A Case Study about Creating an Interprofessional Global Health Project
  3. Book Review: Conflicts of Interest and the Future of Medicine: The United States, France and Japan by Marc A. Rodwin
Table of Contents
Table Of Contents
Letter From the Editor
Letter From The Editor
ASLME - [PDF]

In a year that has been replete with anniversaries and milestones, I note with great delight that this is the fortieth regular issue of the Journal of Law, Medicine & Ethics in which I appear on the masthead as editor. There has been no greater honor or pleasure in my professional life than to be affiliated with this wonderful publication, and I sincerely hope that I can shepherd another forty issues to our loyal readers and members in the future.
Introductions
Introduction
John-Stewart Gordon and Jerome Bickenbach - [PDF]

The formerly well-established, medically based idea of disability, with its charity-based approach to treatment and services, is being replaced by a human rights-based approach in which people with impairments are no longer thought to be medical problems who are totally dependent on the beneficence of non-impaired people in society but who have fundamental rights to support, inclusion, and participation. This long-awaited change - legally incorporated into the United Nations' Convention on the Rights of Persons with Disabilities (2006) - is an important milestone for the disability rights movement, at least in theory. The acknowledgement of the different worries and various hardships of people with impairments has found its expression in the powerful language of human rights in support of their vital concerns.
Symposium Articles
Is Inclusive Education a Human Right?
John-Stewart Gordon - [PDF]

The widespread view - proclaimed by proponents of disability studies, some disability federations, and many disabled people - that there is a human right to inclusive education, was eventually substantiated by international law with the UN Disability Convention (CRPD) in 2006. One of the most discussed issues in disability studies concerns the CRPD; the contributions are legion. Surprisingly, there are hardly any substantial contributions that pay particular attention to the important question of whether inclusive education is a moral human right, and, if so, how this particular human right could be morally justified. A related topic that is frequently discussed concerns the question of whether inclusive education is compatible with the International Bill of Human Rights. Other scholars, such as Theresia Degener, wholeheartedly support the idea that inclusive education is a substantial legal and moral human right. The majority of scholars in the debate do not (really) question the idea that there is a moral human right to inclusive education, but simply take it for granted - which is one of the main reasons why there is hardly any critical discussion on this issue. According to them, the normative question of whether one should endorse inclusive education is not a real question; for them it is already clear that inclusive education is better than separate education.
Disability and Capability: Exploring the Usefulness of Martha Nussbaum's Capabilities Approach for the UN Disability Rights Convention
Caroline Harnacke - [PDF]

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) aims at empowering people with disabilities by granting them a number of civil and political, but also economic, social, and cultural rights. This is a groundbreaking agreement for all persons with disabilities, especially because it is the first human rights agreement for disabled people, and it is legally binding. For those states who signed it, it also brings various governmental obligations. Implementing the CRPD will clearly be politically challenging and also very expensive for all states, but even more so for poor ones.
Human Rights, Civil Rights: Prescribing Disability Discrimination Prevention in Packaging Essential Health Benefits
Anita Silvers and Leslie Francis - [PDF]

Health care insurance schemes, whether private or public, are notoriously unaccommodating to individuals with disabilities. While most nonelderly nondisabled persons in the U.S. are insured through private sources, coverage sources for nonelderly persons with disabilities have traditionally been a mix of private and public coverage. For all age groups, the employment-to-population ratio is much lower for persons with a disability than for those with no disability. Moreover, employed persons with a disability were more likely to be self-employed than those with no disability. As a group, therefore, nonelderly people with disabilities have not been as well positioned as others to obtain private health care insurance because in the U.S., acquiring such coverage usually is employer based.
Supported Decision- Making and Personal Autonomy for Persons with Intellectual Disabilities: Article 12 of the UN Convention on the Rights of Persons with Disabilities
Nandini Devi - [PDF]

Making decisions is an important component of everyday living, and issues surrounding autonomy and self-determination are crucial for persons with intellectual disabilities. Adults with intellectual disabilities are characterized by the limitations in their intellectual functioning and in their adaptive behavior, which compromises three skill types (conceptual skills, social skills, and practical skills), and this starts before the age of 18.1 Though persons with intellectual disabilities are characterized by having these limitations, they are thought to face significant decisionmaking challenges due to their disability. Moving away from this generalization, Article 12 (Equal recognition before the law) of the United Nations (UN) Convention on the Rights of Persons with Disabilities (herewith called "the Convention") addresses this issue of decision-making for persons with disabilities, recognizing the right to legal capacity. What is legal capacity?
Expanding the Horizons of Disability Law in India: A Study from a Human Rights Perspective
Tushti Chopra - [PDF]

Human rights are basic, inalienable, interdependent, and universally recognized rights that are sine qua non for existence and growth of any human to be his best. These human rights are to be enjoyed by all human beings (individually or collectively) by virtue of being human, irrespective of their limitations or disabilities; due to the stated reason, the rights of disabled people as a "group right" are recognized as a third-generation human right.
Disability, "Being Unhealthy," and Rights to Health
Jerome Bickenbach - [PDF]

Often advocates for persons with disabilities are resistant to what might appear to be the banal truism that, at bottom, disability is a decrement in health. Disability advocates have long objected to the "medicalization" of disability, when that means focusing entirely on a person's underlying impairments and ignoring all of the manifold obstacles in his or her environment - e.g., physical, human-built, attitudinal, social, political, and cultural - that makes living with those impairments at least disadvantageous and socially devalued. Over-medicalization is another and well understood problem that people with disabilities are justifiably concerned about. Yet it is somewhat of a mystery why anyone with an impairment would ever deny, or feel uncomfortable being told, that their impairment is a health problem. Surely, people with disabilities are unhealthy, by virtue of their impairments and to the degree according to the severity of those impairments. How could it be otherwise?
Subversive Subjects: Rule-Breaking and Deception in Clinical Trials
Rebecca Dresser - [PDF]

Scientific reports about clinical research appear objective and straightforward. They describe a study's findings, methods, subject population, number of subjects, and contribution to existing knowledge. The overall picture is pristine: the research team establishes the requirements of study participation and subjects conform to these requirements. Readers are left with the impression that everything was done correctly, by the book.
Independent Articles
The Ethics of Intellectual Property Rights in an Era of Globalization
Aakash Kaushik Shah, Jonathan Warsh, and Aaron S. Kesselheim - [PDF]

In recent decades, advances in information technology have given rise to a post-industrial society in which emphasis on the manufacture of material goods has been supplanted by the creation of intellectual property. Indeed, this new "knowledge economy" can be tracked by the exponential growth in patented products across a range of sectors since the 1980s (see Figure 1). According to the United States Patent and Trademark Office, the number of annual patent applications submitted grew from 112,379 to 520,277 over the past three decades, a 464% increase.
Supporting Second Victims of Patient Safety Events: Shouldn't These Communications Be Covered by Legal Privilege?
Melanie E. de Wit, Clifford M. Marks, Jeffrey P. Natterman, and Albert W. Wu - [PDF]

The harmful impact of an adverse event ripples beyond injured patients and their families to affect physicians, nurses, and other health care staff that are involved. These "Second Victims" may experience intense feelings of anxiety, guilt, and fear. They may doubt their clinical competence or ability to continue working at all. Some go on to suffer posttraumatic stress disorder and depression.
Another Look at the Legal and Ethical Consequences of Pharmacological Memory Dampening: The Case of Sexual Assault
Jennifer A. Chandler, Alexandra Mogyoros, Tristana Martin Rubio, and Eric Racine - [PDF]

Post-traumatic stress disorder (PTSD) is a "young" disorder formally recognized in the early 1980s, although the symptoms have been noted for centuries particularly in relation to military conflicts. PTSD may develop after a serious traumatic experience that induces feelings of intense fear, helplessness or horror. It is currently characterized by three key classes of symptoms which must cause clinically significant distress or impairment of functioning: (1) persistent and distressing re-experiencing of the trauma; (2) persistent avoidance of stimuli associated with the trauma and numbing of general responsiveness; and (3) persistent symptoms of hyper-arousal. One of the possible symptoms within the second class is difficulty in remembering an important aspect of the traumatic event.
The Right to Language
Tom Humphries, Raja Kushalnagar, Gaurav Mathur, Donna Jo Napoli, Carol Padden, Christian Rathmann, and Scott Smith - [PDF]

We argue for the existence of a state constitutional legal right to language. Our purpose here is to develop a legal framework for protecting the civil rights of the deaf child, with the ultimate goal of calling for legislation that requires all levels of government to fund programs for deaf children and their families to learn a fully accessible language: a sign language. While our discussion regards the United States, the argument we make is based on human rights and the nature of law itself, and can likely be adapted to any country.
Adherence to the Request Criterion in Jurisdictions Where Assisted Dying Is Lawful? A Review of the Criteria and Evidence in the Netherlands, Belgium, Oregon, and Switzerland
Penney Lewis and Isra Black - [PDF]

Some form of assisted dying (voluntary euthanasia and/or assisted suicide) is lawful in the Netherlands, Belgium, Oregon, and Switzerland. In order for individual instances of assisted dying to be lawful in these jurisdictions, a valid request must precede the provision of assistance to die. Non-adherence to the criteria for valid requests for assisted dying may be a trigger for civil and/or criminal liability, as well as regulatory sanctions where the assistor is a medical professional.
Columns
Currents in Contemporary Bioethics: Predictive Genetic Testing of Children and the Role of the Best Interest Standard
Lainie Friedman Ross - [PDF]

The genetic testing and screening of children has been fraught with controversy since Robert Guthrie developed the bacterial inhibition assay to test for phenylketonuria and advocated for rapid uptake of universal newborn screening in the early 1960s. Today with fast and affordable mass screening of the whole genome on the horizon, the debate about when and in what scenarios children should undergo genetic testing and screening has gained renewed attention.
Teaching Health Law: A Place for All at the Global Health Table: A Case Study about Creating an Interprofessional Global Health Project
Virginia Rowthorn - [PDF]

For the past four years, the University of Maryland Baltimore (UMB) has sent an interprofessional team of students to Malawi in Southern Africa to research a complex global health issue with local counterparts. Students and faculty members from the six UMB schools participated in each of the six-week summer projects. The initiative - now known as the Malawi Project - started with a big idea: to use the funds we had for individual travel grants to create a single global health learning experience for students from all the schools on campus. Like most big ideas, we had only the faintest idea of what we were getting into and what the outcomes would be.
Book Review: Conflicts of Interest and the Future of Medicine: The United States, France and Japan by Marc A. Rodwin
Eric G. Campbell - [PDF]

Over the last two decades much has been written about conflicts of interest in medicine. With a quick glance over my book shelves I can spot at least a dozen books explicitly on financial conflicts of interest (FCOI) and several dozen more that tangentially touch upon this topic. What makes Marc Rodwin's book quite valuable is the scope of what is considered under the rubric of FCOI, the multi-national comparisons, his in-depth consideration of the historical context in which FCOI has developed, and the chapter dedicated to reforms aimed at limiting physicians FCOI.