Policymakers, employers, insurance companies, researchers, and health care providers have developed an increasing interest in using principles from behavioral economics and psychology to persuade people to change their health-related behaviors, lifestyles, and habits. In this article, we examine how principles from behavioral economics and psychology are being used to nudge people (the public, patients, or health care providers) toward particular decisions or behaviors related to health or health care, and we identify the ethically relevant dimensions that should be considered for (...) the utilization of each principle. (shrink)

Emerging parallel to long-standing, academic and policy inquiries on personal responsibility for health is the empirical assessment of lay persons’ views. Yet, previous studies rarely explored personal responsibility for health among lay persons as dynamic societal values. We sought to explore lay persons’ views on personal responsibility for health using the Fairness Dialogues, a method for lay persons to deliberate equity issues in health and health care through a small group dialogue using a hypothetical scenario. We conducted two 2-h Fairness (...) Dialogues sessions (n = 15 in total) in Nova Scotia, Canada. We analyzed data using thematic analysis. Our analysis showed that personal choice played an important role in participants’ thinking about health. Underlying the concept of personal choice was considerations of freedom and societal debt. In participants’ minds, personal and social responsibilities co-existed and they were unwilling to determine health care priority based on personal responsibility. The Fairness Dialogues is a promising deliberative method to explore lay persons’ views as dynamic values to be developed through group dialogues as opposed to static, already-formed values waiting to be elicited. (shrink)

This paper scrutinizes the tension between individuals’ rights and paternalism. I will argue that no normative account that includes rights of individuals can justify hard paternalism since the infringement of a right can only be justified with the right or interest of another person, which is never the case in hard paternalism. Justifications of hard paternalistic actions generally include a deviation from the very idea of having rights. The paper first introduces Tom Beauchamp as the most famous contemporary hard paternalist (...) by outlining his moral theory (principlism) and showing why it, as it stands, has to allow for hard paternalism. Secondly, the paper focuses on the notion of rights within principlism. I will employ traditional theories of rights to make sense of rights in principlism. Unfortunately, this attempt fails. In the third part, then, I claim that rights can only be limited with reference to the rights or interests of others. This structure is the very point of rights, it is their bite. I will argue for this claim and show its implications. The most important implication is that not only principlism, but every normative theory that includes rights of individuals, has to abolish hard paternalism. (shrink)

Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...) sensors Population biobanks, cohort studies, and genome databases Clinical and public health data Direct-to-consumer genetic testing Social media Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections. Although health research conducted using these collections is broadly recognized as beneficent, secondary uses of these data and samples may be controversial. We examine both documented and hypothetical scenarios of secondary uses of health data and samples. In particular, we focus on the use of health data for purposes of: Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Current safeguards relating to the use of health data and samples include research ethics oversight and privacy laws. These safeguards have a strong focus on informed consent and anonymization, which are aimed at the protection of the individual research subject. They are not intended to address broader societal implications of health data and sample collections. As such, existing arrangements are insufficient to protect against subversion of health databases for non-sanctioned secondary uses, or to provide guidance for reasonable but controversial secondary uses. We are concerned that existing debate in the scholarly literature and beyond has not sufficiently recognized the secondary data uses we outline in this paper. Our main purpose, therefore, is to raise awareness of the potential for unforeseen and unintended consequences, in particular negative consequences, of the increased availability and development of health data collections for research, by providing a comprehensive review of documented and hypothetical non-health research uses of such data. (shrink)

The Patient Protection and Affordable Care Act turns to a nontraditional mechanism to improve public health: employer -provided financial incentives for healthy behaviors. Critics raise questions about incentive programs' effectiveness, employer involvement, and potential discrimination. We support incentive program development despite these concerns. The ACA sets the stage for a broad-based research and implementation agenda through which we can learn to structure incentive programs to not only promote public health but also address prevalent concerns.

Individuals can often take steps to preserve or improve their own health. They can eat appropriate quantities of healthy foods, exercise, and refrain from smoking. They can obtain preventive care and adhere to their physicians’ advice about how best to manage their health. But they often fail to take these steps.A widespread failure to adopt healthy behaviors can significantly erode public health while increasing health care costs. Obesity, for example, increases the risk of heart disease, stroke, liver disease, and certain (...) cancers. By one estimate, it is responsible for almost 10 percent of medical spending in the United States, or about $147 billion per year. Smoking increases the risk of heart disease, stroke, lung disease, and cancer; it accounts for nearly 20 percent of deaths each year in the United States and about $96 billion in health care expenditures. (shrink)

Background There has been growing interest in the use of incentives to increase the uptake of health-related behaviours and achieve desired health outcomes at the individual and population level. However, the use of incentives remains controversial for ethical reasons. An area in which incentives have been not only proposed but used is HIV prevention, testing, treatment and care—each one representing an interconnecting step in the "HIV Cascade." Methods The main objective of this qualitative case study was to document the experiences (...) of health care and service providers tasked with administrating incentivized HIV testing, treatment, and care in British Columbia, Canada. A second objective was to explore the ethical and professional tensions that arise from the use of incentives as well as strategies used by providers to mitigate them. We conducted interviews with 25 providers and 6 key informants, which were analyzed using applied thematic analysis. We also collected documents and took field notes. Results Our findings suggest that incentives target populations believed to pose the most risk to public health. As such, incentives are primarily used to close the gaps in the HIV Cascade by getting the "right populations" to test, start treatment, stay on treatment, and, most importantly, achieve viral suppression. Participants considered that incentives work because they "bring people through the door." However, they believed the effectiveness of incentives to be superficial, short-lived and one-dimensional—thus, failing to address underlying structural barriers to care and structural determinants of health. They also raised concerns about the unintended consequences of incentives and the strains they may put on the therapeutic relationship. They had developed strategies to mitigate the ensuing ethical and professional tensions and to make their work feel relational rather than transactional. Conclusions We identify an urgent need to problematize the use of incentives as a part of the "HIV Cascade" agenda and interrogate the ethics of engaging in this practice from the perspective of health care and service providers. More broadly, we question the introduction of market logic into the realm of health care—an area of life previously not subject to monetary exchanges. (shrink)

Patients’ medical conditions can result from their own avoidable risk taking. Some lung diseases result from avoidable smoking and some traffic accidents result from victims’ reckless driving. Although in many nonmedical areas we hold people responsible for taking risks they could avoid, it is normally harsh and inappropriate to deny patients care because they risked needing it. Why? A popular account is that protecting everyone’s "decent minimum," their basic needs, matters more than the benefits of holding people accountable. This account (...) is deficient. Protecting the decent minimum is not always served by offering noncompliant patients either nonbasic or basic care. Nor is protecting that minimum always served by unconditional medical care better than by nonmedical interventions. To interpret the decent minimum in democratic terms is a futile response to these challenges. Ideas for new accounts are suggested. (shrink)

This chapter concerns the normativity of the concepts of paternalism and libertarian paternalism. The first concept is central in evaluating public health policy, but its meaning is controversial. The second concept is equally controversial and has received much attention recently. It may or may not shape the future evaluation of public health policy. In order to facilitate honest and fruitful debate, I consider three approaches to these concepts, in terms of their normativity. Concepts, I claim, may be considered nonnormative, normatively (...) charged, or normative in that they involve more complex relationships between values or duties. While the last approach is often best, other approaches may be appropriate depending on the context and purpose of discussion. The chapter’s conceptual investigation is illustrated by application to two public health policies: a tax on the consumption of fat and the encouragement of health-promoting food displays in restaurants and supermarkets. (shrink)

This essay seeks to expose readers from the social sciences to current debates in their fields, beyond the discussions of induction and deduction one learns about in a typical research methods course. It provides glimpses of social science from its dawn in 17th century empiricism, through the rise of postpositivism and antipositivism, to the infamous “science wars” in the 1990s, and expresses a hope for a broader and more inclusive future. Specifically, the paper compares the traditional positivist method of scientific (...) inquiry to a phenomenological approach, and attempts to demonstrate the relevance of philosophical investigation in social science research. (shrink)