In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, can also influence their propensity to make personal data available for research purposes. We take the case of national precision medicine initiatives as an illustrative example of this possible tendency. Precision medicine pools together unprecedented amounts of genetic as well as phenotypic data. The possibility that private insurers could claim access to such rapidly accumulating biomedical Big Data or to (...) health-related information derived from it would discourage people from enrolling in precision medicine studies. Should that be the case, the economic value of personal data for the insurance industry would end up affecting the public value of data as a scientific resource. In what follows we articulate three principles – trustworthiness, openness and evidence – to address this problem and tame its potentially harmful effects on the development of precision medicine and, more generally, on the advancement of medical science. (shrink)

Ob im Fitnessstudio, in der Mode oder bei der Ernährung – heute wird ständig Körperoptimierung betrieben. Durch neue technologische Entwicklungen wie Neuroimplantate und Brain-Computer-Interfaces (neurologisches Enhancement) wird die Körperoptimierung auf eine neue Ebene gehoben. Mittels Pharmazeutika sollen Kognition (kognitives Enhancement) oder moralische Verhaltensweisen (moralisches Enhancement) verbessert werden, Prothesen werden in den Körper integriert und es werden ästhetisch-chirurgische Eingriffe vorgenommen. 2019 wurden insgesamt 983.432 ästhetische Eingriffe in Deutschland unternommen.1 Im Alltag sind Wearables wie Smartwatches mit ihren Fitnessprogrammen und vielfältige Smartphone-Apps zur (...) Körperoptimierung allgegenwärtig. Technologische Körperoptimierung spielt eine wichtige Rolle im menschlichen Leben und bedarf einer ethischen Auseinandersetzung. Der Beitrag behandelt die Frage, wie die gegenwärtigen technologischen Körperoptimierungen ethisch bewertet werden können und stellt dabei die Autonomie ins Zentrum der ethischen Überlegungen. Inwiefern kann die Entscheidung für eine Körperoptimierung autonom getroffen werden? Welche ethischen Aspekte spielen eine Rolle und wie wirken sich die Optimierungen auf das Selbstverständnis des Individuums aus? -/- Die Fülle an Optimierungsmaßnahmen macht es notwendig, in Kap. 1 zunächst in den Begriff, die Formen und Ziele der Körperoptimierung einzuführen und Differenzierungen vorzunehmen. In Kap. 2 wird die Autonomie in den Fokus gerückt und mit Rückgriff auf Foucaults Konzepte der „Bio-Macht“ und „Technologien des Selbst“ untersucht, wie die Optimierungsentscheidungen zwischen individueller Selbstbestimmung und gesellschaftlicher Fremdbestimmung verortet werden können. Daran anknüpfend wird in Kap. 3 nach einer ethischen Bewertung der Optimierungsmaßnahmen gefragt. Der Aufsatz sucht nach einer ethischen Einordnung der Körperoptimierungen und gelangt letztlich zu wichtigen Erkenntnissen über den Zusammenhang von Identität/ Körper, Gesellschaft und Technik. Kap. 4 führt dazu die These aus, dass Technik mithervorbringt, was Körper bedeutet und zeigt auf, wie Technologien auf diese Weise eine Chance sein können, das Menschenund Körperverständnis neu und inklusiv auszuhandeln. Aus den Untersuchungsergebnissen werden letztlich in Kap. 5 Schlüsse für die Theologie abgeleitet und Wege dargestellt, wie die Theologie einen Beitrag zu den Optimierungen leisten kann. Abschließend wird in Kapitel 6 ein Fazit gezogen und ein Ausblick für die zukünftige ethische Forschung eröffnet. (shrink)

Advance health care directives and informed consent remain the cornerstones of patients' right to self-determination regarding medical care and preferences at the end-of-life. However, the effectiveness and clinical applicability of advance health care directives to decision-making on the use of life support systems at the end-of-life is questionable. The Uniform Anatomical Gift Act (UAGA) has been revised in 2006 to permit the use of life support systems at or near death for the purpose of maximizing procurement opportunities of organs medically (...) suitable for transplantation. Some states have enacted the Revised UAGA (2006) and a few of those have included amendments while attempting to preserve the uniformity of the revised Act. Other states have introduced the Revised UAGA (2006) for legislation and remaining states are likely to follow soon. (shrink)

Physicians expressing opinions on medical matters that run contrary to the consensus of experts pose a challenge to licensing bodies and regulatory authorities. While the right to express contrarian views feeds a robust marketplace of ideas that is essential for scientific progress, physicians advocating ineffective or dangerous cures, or actively opposing public health measures, pose a grave threat to societal welfare. Increasingly, a distinction has been made between professional speech that occurs during the physician-patient encounter and public speech that transpires (...) beyond the clinical setting, with physicians being afforded wide latitude to voice empirically false claims outside the context of patient care. This paper argues that such a bifurcated model does not sufficiently address the challenges of an age when mass communications and social media allow dissenting physicians to offer misleading medical advice to the general public on a mass scale. Instead, a three-tiered model that distinguishes between citizen speech, physician speech and clinical speech would best serve authorities when regulating physician expression. (shrink)

For many rare diseases, the availability of effective interventions is limited or non-existent. In this context, clinical research evaluating emerging interventions may be the only potentially “the...

Pragmatic clinical trials (PCTs) seek to show the effectiveness of treatments in routine, clinical practice (MacPherson 2004). However, a number of ethical challenges come to the fore when collater...

In February 1997, the Committee on Bioethics of the American Academy of Pediatrics updated its position on religious exemptions to medical care. In its earlier statement, the committee noted that forty-four states have religious exemptions to the child abuse and neglect statutes, and they argued for the repeal of these exemptions. The committee did not indude in its statement a position on religious exemptions to childhood immunization requirements that exist in forty-eight states, although this issue was discussed in committee meetings. (...) In its revised statement, the committee concluded that “The AAP does not support the stringent application of medical neglect laws when children do not receive recommended immunizations.” In this paper, we consider whether failure to immunize one's child is a form of medical neglect and, if so, whether states should repeal their religious exemptions to the immunization statutes. We argue that failure to vaccinate a child properly is medical neglect. (shrink)

Lukas J. Meier et al. offer the promise of a pathway for resolving clinical bioethical problems using an artificial intelligence interface. The ultimate goal, we assume, is...

Developments in the provision of care and support services for disabled and older people across developed welfare states have led to the expansion of personalisation (sometimes called cash-for-care, direct payments, care payments, etc.) schemes, whereby cash is paid in substitute for care services and support. Although these schemes vary considerably in their scope and operation (sometimes paying carers directly, sometimes enabling disabled and older people to act as direct employers, sometimes mixing paid and unpaid care), they share the characteristics of (...) commodifying care and support services and will have a potentially profound impact on the relationship between individuals, families, communities and the welfare state. Although the schemes have been evaluated within their own national contexts, little work has been done so far to explore the theoretical implications of their development and extension, particularly from an ethics of care perspective. This paper intends to fill that theoretical gap by drawing on comparative evidence from several schemes across different national contexts to develop an analysis which draws on feminist theory and an ethics of care approach to examine (a) the gendered policy outcomes and impact of such schemes; (b) a feminist analysis of the governance implications of personalisation; (c) the implications for the gendered division of work, particularly between paid and unpaid care work and between different groups of paid and unpaid carers; (d) an ethics of care analysis of the impact of personalisation over the lifecourse of disabled and older people, and carers; and (e) a discussion of the relationship between commodification, empowerment, citizenship and choice drawing on the work of care ethicists. It will draw conclusions about the outcomes of a range of types of personalisation schemes and thus have implications for theory, policy and practice. (shrink)

Advances in assisted reproductive technologies can give rise to several ethical challenges. One of these challenges occurs when the reproductive desires of two individuals become incompatible and conflict. To address such conflicts, it is important to unbundle different aspects of (non)parenthood and to recognize the corresponding reproductive rights. This article starts on the premise that the six reproductive rights—the right (not) to be a gestational, genetic, and social parent—are negative rights that do not entail a right to assistance. Since terminating (...) or continuing a pregnancy is a form of assistance, the right (not) to be a gestational parent should enjoy primacy in conflicts. However, while refusing assistance may hinder the reproductive project of another person, “prior assistance” does not entitle someone to violate a reproductive right. Therefore, our analysis provides reasons to argue that someone has a right to unilaterally use cryopreserved embryos or continue the development of an entity in an extracorporeal gestative environment (i.e., ectogestation). Although this could lead to a violation of the right not to be a genetic parent, it does not necessarily entail a violation of the right not to be a social parent. (shrink)

In February 1997, the Committee on Bioethics of the American Academy of Pediatrics updated its position on religious exemptions to medical care. In its earlier statement, the committee noted that forty-four states have religious exemptions to the child abuse and neglect statutes, and they argued for the repeal of these exemptions. The committee did not indude in its statement a position on religious exemptions to childhood immunization requirements that exist in forty-eight states, although this issue was discussed in committee meetings. (...) In its revised statement, the committee concluded that “The AAP does not support the stringent application of medical neglect laws when children do not receive recommended immunizations.” In this paper, we consider whether failure to immunize one's child is a form of medical neglect and, if so, whether states should repeal their religious exemptions to the immunization statutes. We argue that failure to vaccinate a child properly is medical neglect. (shrink)

Functional MRI shows promise as a candidate prognostication method in acutely comatose patients following severe brain injury. However, further research is needed before this technique becomes appropriate for clinical practice. Drawing on a clinical case, we investigate the process of obtaining informed consent for this kind of research and identify four ethical issues. After describing each issue, we propose potential solutions which would make a patient’s participation in research compatible with her rights and interests. First, we defend the need for (...) traditional proxy consent against two alternative approaches. Second, we examine the impact of the intensive care unit environment on the informed consent process. Third, we discuss the therapeutic misconception and its potential influence on informed consent. Finally, we deal with issues of timing in recruiting participants and related factors which may affect the risks of participation. (shrink)

The purpose of this article is threefold: (a) to describe the relevant ethical and legal issues associated with decisional capacity among minors and to discuss the importance of these concepts for children and adolescents living with HIV, (b) to provide a framework for assessing the decisional capacity of children and adolescents with HIV, and (c) to present a model for thinking about how to use this assessment data to guide action along the protection-autonomy continuum.

A recent controversy concerning the pricing of drugs and other technological innovations funded by public dollars raised profound moral and social questions, questions the bioethics community has long overlooked.

Parts I through III of this paper will examine several, increasingly comprehensive forms of aggregation, ranging from insurance reimbursement “lock-in” programs to PDMPs to completely unified electronic medical records. Each part will advocate for the adoption of these aggregation systems and provide suggestions for effective implementation in the fight against opioid misuse. All PDMPs are not made equal, however, and Part II will, therefore, focus on several elements — mandating prescriber usage, streamlining the user interface, ensuring timely data uploads, creating (...) a national data repository, mitigating privacy concerns, and training doctors on how to respond to perceived doctor-shopping — that can make these systems more effective. In each part, we will also discuss the privacy concerns of aggregating data, ranging from minimal to significant, and highlight the unique role of stigma in motivating these concerns. In Part IV, we will conclude by suggesting remedial steps to offset this loss of privacy and to combat the stigma around SUDs and mental health disorders in general. (shrink)

A particle of molecular dimensions which can exist in two states is associated with a membrane pore through which molecules of a gas can pass. The gas molecules from two identical phases on either side of the membrane may pass only when the particle is in one particular state. If certain restrictions are imposed on the system, then the particle appears to act like a Maxwell's Demon(1) which “handles” the gas molecules during their passage through the pore.

The current study explores role retreatism in secondary social studies teachers who coach athletics. The purpose of this study was to determine the extent to which social studies teacher-coaches retreat towards coaching and reasons for such prioritization. A case study relying primarily on interview and document data was conducted which included three secondary social studies teachers who coach football in the southeastern United States. Results indicate that participants prioritized coaching over teaching to cope with role conflict. The study further highlights (...) the unequal rewards system in American schools, which promotes athletics over academics. (shrink)

Obstetric ultrasound has become a significant tool in obstetric practice, however, it has been argued that its increasing use may have adverse implications for women’s reproductive freedom. This study aimed to explore Australian obstetricians’ experiences and views of the use of obstetric ultrasound both in relation to clinical management of complicated pregnancy, and in situations where maternal and fetal health interests conflict.

This study – the first to explore how infertility providers confront several critical dilemmas concerning sex selection of embryos for nonmedical, social reasons – highlights key challenges and questions. Clinicians struggle, for instance, with how to define “family balalancing”, when to offer it, and how to decide.

Quinoa farmers in San Agustín, Bolivia face the dilemma of producing for a growing international market while defending their community interests and resources, meeting their basic household needs, and making a profit. Farmers responded to a changing market in the 1970s by creating committees in defense of quinoa and farmer cooperatives to represent their interests and maximize economic returns. Today farmer cooperatives offer high, stable prices, politically represent farmers, and are major quinoa exporters, but intermediaries continue to play an important (...) role in the local economy. Meanwhile, some farmers rebuff the national cooperatives and intermediaries in favor of a denomination of origin and closer association with local cooperatives. This article, based on 4 months of ethnographic research, explores the reasons for the continued presence of intermediaries on the market landscape and how farmers have worked to create a quinoa economy embedded with fair trade values. Farmers demand stable prices, flexible standards, provision of services, and promises of maintaining the distinctive qualities of San Agustín quinoa. They frame their trades in economic, utility, and solidarity terms to reflect their livelihood strategies, farming capabilities, and personal concepts of fair trade. Meanwhile cooperatives, development initiatives, and intermediaries each argue that their particular buying practices allow farmers to attain household goods, credit, and cash for food and economic security. (shrink)

The purpose of this article is to introduce a model of value-based leadership. The model is based on tensions among values, interests, and power ; and tensions that take place within and among citizens, workers, and leaders. The VIP-CWL model describes the forces at play in the promotion of value-based practice and formulates recommendations for value-based leadership. The ability to enact certain values is conditioned by power and personal interests of communities, workers, and leaders of organizations. People experience internal conflicts (...) related to VIP as well as external conflicts related to disagreements with the CWL. Value-based practice is predicated on the ability to alleviate these tensions. Leaders have 4 main roles in promoting value-based practice: clarify values, promote personal harmony among VIP, enhance congruence of VIP among CWL, and confront people and groups subverting values or abusing power to promote personal interests. (shrink)

This scoping review maps research ethics and integrity challenges and best practices encountered by research actors in the DACH countries (Germany, Austria, and Switzerland), including researchers, funders, publishers, research ethics committees, and policymakers, during the COVID-19 pandemic. The COVID-19 pandemic brought research and, in turn, research ethics and integrity, into public focus. This review identified challenges related to changing research environments, diversity in research, publication and dissemination trends, scientific literacy and trust in science, recruitment, research redundancy and study termination, placebo (...) and human challenge studies, data management, and informed consent. These challenges are linked to two crucial factors: first, actors in the DACH research ecosystem lacked a sound knowledge base to assess the risks and benefits of research during the COVID-19 pandemic. Second, researchers in the DACH region faced pressure from policymakers, funders, and the public to generate relevant, timely, and consistent findings to mitigate the impacts of the COVID-19 pandemic. In addition, this review highlights best practices to mitigate the effects of future crises on research ethics and integrity, including enhanced cooperation among actors, continuous ethics assessments, and support for public scientific literacy. (shrink)

In the case described here, an often recurring and unresolved scenario is presented where communication issues are underpinned by pre-existing perceptions of mistrust between the caregivers and the surrogate family members in the intensive care unit. Racial factors play into this mistrust, when a family feel that their loved one is “yet again” not being treated in the best way possible. The perspectives of all stakeholders are considered in the discussion and relevant literature is cited.

After clarifying the outlines of Raz's interest theory of rights and its relationship to aspects of the principles theory of rights, I consider how his recent observations on human rights manage to fit into the interest theory. I then address two questions. First, I elaborate on Raz's definition of morally fundamental rights, arguing that he is right in claiming that there are no such rights. I then show that the interest theory accommodates the notion that rights may take qualitative precedence (...) over conflicting considerations—a question that has become increasingly relevant in light of recent writing on rights. (shrink)

The central thesis of this essay is that basic income experiments are justified if their expected benefits in terms of justice exceed their expected costs in terms of justice. The benefits are a function of basic income’s effect on the level of justice attained in the context in which it is implemented, and the experiment’s impact on future policy-making. The costs comprise the sacrifices made as a result of the experiment’s interventional character, as well as the study’s opportunity costs. In (...) light of the proposed standard of justification for basic income experiments, the factors that play a role in it, and the way these interact with one another, this essay provides some practical recommendations for researchers hoping to conduct such an experiment. (shrink)

This article explores how working mothers negotiate the often competing spheres of paid work and unpaid domestic and care work. Drawing upon qualitative data from a varied sample of women, it discusses the impact of workplace demands on home life, women’s attempts to contain the domestic sphere so as not to disrupt paid work, and the emotional conflicts inherent to combining dual roles. In addition, the article applies Bauman’s concepts of order and disorder to women’s experiences of work–care negotiation. Whilst (...) it is recognized that Bauman’s work largely ignores gender, his discussion of solid modernity with its emphasis on order and the transition to liquid modernity with its emphasis on disorder provide a useful theoretical lens through which to illuminate women’s accounts of managing dual roles. (shrink)

The American health care system long has been distinctive in its embrace of market forces. For-profit private insurers play a major role in providing coverage, though they operate alongside public insurance programs that cover over one-third of the population. Historically, federal and state governments’ regulation of insurance markets was limited, leaving insurers to set premiums and coverage rules largely as they saw fit.Government’s role in controlling health care spending has been even more circumscribed. Purchasing power is fragmented, with each insurer (...) negotiating its own rates with physicians and hospitals. A formidable medical-industrial complex of for-profit providers, from hospitals to home-health care agencies, dialysis facilities, pharmaceutical companies and much more, has arisen to sell services. (shrink)

According to the Institute of Medicine, chronic pain affects at least 116 million adults in the United States, which is more than the total affected by heart disease, cancer, and diabetes combined. Pain costs the nation up to $635 billion each year in medical treatment and lost productivity. It has been conceptualized as a public health problem due to its prevalence, seriousness, disparities, vulnerable populations, the utility of population health strategies, and the importance of prevention at both the population and (...) individual levels. For many patients, treatment of pain is inadequate due to uncertain diagnoses, societal stigma, the lack of effective treatments, and inadequate patient and clinician knowledge about the best ways to manage pain. This article explores the inadequate treatment of pain in the U.S. and the subsequent rise of prescription painkiller abuse, misuse, and overdoses. This is followed by a review of the actions taken by states to regulate the prescribing of controlled substances. (shrink)