Michael J. Young

Immune to addiction: the ethical dimensions of vaccines against substance abuse

Promising advances have been made in recent years for a unique class of immunotherapies that use vaccination to combat substance-use disorders. Although such vaccines are potentially useful for addictions, they raise a variety of ethical and social questions.

Rationing in the intensive care unit: to disclose or disguise?

Introduction:Growing pressures to ration intensive care unit beds and services pose novel challenges to clinicians. Whereas the question of how to allocate scarce intensive care unit resources has received much attention, the question of whether to disclose these decisions to patients and surrogates has not been explored. Key Considerations:We explore how considerations of professionalism, dual agency, patients and surrogates preferences, beneficence, and healthcare efficiency and efficacy influence the propriety of disclosing rationing decisions in the intensive care unit. Conclusions:There are compelling conceptual reasons to support a policy of routine disclosure. Systematic disclosure of prevailing intensive care unit norms for making allocation decisions, and of at least the most consequential specific decisions, can promote transparent, professional, and effective healthcare delivery. However, many empiric questions about how best to structure and implement disclosure processes remain to be answered. Specifically, research is needed to determine how best to operationalize disclosure processes so as to maximize prospective benefits to patients and surrogates and minimize burdens on clinicians and intensive care units.

The Rise of Crowdfunding for Medical Care: Promises and Perils

Crowdfunding is a financing method characterized by pooling together a large number of smaller contributions to support a specific initiative. The emergence of social media and numerous online platforms has allowed crowdfunding to flourish in popularity. Crowdfunding is an especially effective and popular tool in the realm of supporting charitable or ideological causes. Increasingly prevalent in this realm is crowdfunding for health care costs. n nMany top-earning campaigns on crowdfunding sites are medical in nature. These include campaigns to directly pay for an individual’s medical care as well as those intending to accelerate research on and access to experimental interventions. Sophisticated search tools allow potential donors to sort through campaigns based on specific diseases, age, location, or background of patients.

Direct-to-Patient Laboratory Test Reporting: Balancing Access With Effective Clinical Communication

In February 2014, the Department of Health and Human Services (HHS) issued a landmark ruling allowing patients direct access to completed medical laboratory reports.1 The ruling took effect April 7, 2014, and gives laboratories 180 days from that date to comply. Although this recent change to the Clinical Laboratory Improvement Amendments (CLIA) empowers patients by removing access barriers to personal health information, it raises a variety of clinical and ethical questions involving practitioners, patients, and society. To capture the benefits of the change and to minimize potential challenges, clinicians will need to proactively counsel patients to ensure that patients do not engage in detrimental self-interpretation of test results, especially because of the abundance of information and misinformation made available through the Internet and other sources.2

Defining mental illnesses: can values and objectivity get along?

BackgroundThe creation of each edition of the Diagnostic and Statistical Manual (DSM) of psychiatry has proven enormously controversial. The current effort to revise the ‘bible’ of disorder definitions for the field of mental health is no exception. The controversy around DSM-5 reached a crescendo with the announcement from National Institute of Mental Health (NIMH) that the institute would focus efforts on the development of their own psychiatric nosology, the Research Domain Criteria (RDoC) (NIMH, 2013).DiscussionThe RDoC seem to be structured around the concern that the only way to find objectivity in the classification of diseases or disorders in psychiatry is to begin with biology and work back to symptoms. Values infuse medical categories in various ways and drive practical considerations about where and how to divide up constellations of already agreed upon symptoms.SummaryWe briefly argue that all nosologies are infused with values and, while we should continue to sharpen the psychiatric nosology, normativity will permeate even the strictest biologically based taxonomy; this need not be a bad thing.

Undocumented Injustice? Medical Repatriation and the Ends of Health Care

The authors review the history and motivations behind medical repatriation, the transfer of undocumented patients in need of subacute care to their country of origin. They argue that involuntary medical repatriation violates the ethical duties of health care providers.

Counseling At-Risk Parkinson’s Disease Cohorts: Integrating Emerging Evidence

Purpose of ReviewThis article evaluates the current state of testing and counseling viewpoints for Parkinson’s disease (PD) risk gene carriers and their families.Recent FindingsRecent discoveries of mutations in genes associated with increased risk for PD not only portend novel possibilities for targeted clinical research but also present salient challenges for genetic counseling.SummaryA patient-centered and transparent approach to counseling that assesses preferences and communication styles is described to aid in facilitating the use of evolving evidence regarding strategies to attenuate PD phenoconversion in non-manifesting carriers.

Cautionary optimism: caffeine and Parkinson’s disease risk

Most Parkinson’s disease (PD) patients present without known family history and without a diagnosed prodromal phase, underscoring the difficulty of employing primary (neuroprevention) and secondary (neuroprotection) preventions. In cases of monogenic forms, however, potential gene-carrying family members of a proband could engage in neuroprevention, such as exercise or diet modifications, to attenuate the risk of, or delay, disease development. However, a historical lack of recognized disease-modifying interventions has limited clinicians’ ability to recommend reliable preventive measures in caring for at-risk populations. We briefly analyze the first retrospective study to examine caffeine consumption and PD risk in a LRRK2 R1628P cohort.

Peering into Vulnerable Genes: Genetic Risk and Population Screening

Abstract: Twelve personal narratives address the challenges, benefits, and pitfalls of genetic testing. Three commentary articles explore these stories and suggest lessons that can be learned from them. The commentators come from backgrounds that include bioethics, public health, psychology, and philosophy.

Ethics and Ontology in Deep Brain Stimulation

Rapid advancements in the fields of neurology and neuroscience over the past decade have enabled unprecedented progress toward the development of brain-modulating technologies and therapeutics. Central to these advancements are cross-disciplinary translational research efforts to engineer systems that can reliably deliver electrical, ultrasound, or magnetic impulses to specific deep cortical areas and neural circuits, with the ultimate goal of influencing abnormal patterns of neural activity implicated in disorders of the brain and nervous system (Famm et al. 2013). As knowledge of the brain’s dynamic synaptic networks and microcircuitry expands, it is anticipated that deep brain stimulation (DBS) technologies will begin to target neural activity with increasingly greater precision and functional efficiency (Warner-Schmidt 2013). While research in these domains carries tremendous promise for treating many neurologic and psychiatric conditions that have long been considered refractory to traditional treatments (Lozano and Lipsman 2013; Nestler 2013; Warner-Schmidt 2013), they introduce a complex array of ethical, social, and legal questions. Johansson and colleagues (2014) aim to provide clinicians and ethicists with a framework for evaluating and contextualizing the normative dimensions of this evolving class of technologies. The centerpiece of this framework is a distinction drawn between inherent ethical concerns (IECs) and noninherent ethical concerns (N-IECs). In this framework, IECs are described as supervening on necessary characteristics of DBS, while N-IECs are described as emerging from nonessential and potentially alterable properties of DBS. The authors contend that this distinction is “an analytical one” and argue that the conceptual scaffolding that emerges from this distinction “provides clues to understanding how present and upcoming moral concerns regarding DBS emerge and become obsolete, and to the type of changes possible for each kind of bioethical concern” (30). While prima facie plausible, this conceptual framework and its normative implications rely on a set of deeper philosophical premises that merit further exploration. Chief among these premises is an underlying commitment to a theory of essentialism about deep brain stimulation technologies. According to this assumption, the properties of