Mamerto Oyala Cuéllar -- Guillermo Francovich -- José Antonio Arze -- Roberto Prudencio -- Augusto Pescador -- Luis Carranza Siles -- Manfredo Kempff Mercado -- Federico Blanco Catacora -- Rubén Carrasco de la Vega -- Marvin Sandi.

This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of consent: first, (...) how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision. A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed. (shrink)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

The inventor of the concepts of emics and etics, linguist Kenneth Pike, uses this volume as a forum to explain their development and their usage today. He is joined in the debate by renowned anthropologist Marvin Harris. Eight other scholars add to the scholarly discourse and demonstrate applications of the concepts in a variety of disciplines. Referring to insider versus outsider, subjective versus objective views of the world, these concepts are vital for researchers dealing with cultures other than their (...) own. (shrink)

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...) to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)

The coronavirus disease 2019 pandemic led to various government-imposed limitations on social interaction and strict home confinement. Such involuntary social-distancing policies can exacerbate feelings of loneliness and alter emotional well-being. Dysregulation of the hypothalamic-pituitary-adrenocortical axis is a potential mechanism for loneliness’ deleterious health effects. In this study, we explored whether pre-pandemic diurnal cortisol output, a measure of HPA axis function, may predict the propensity to changes in loneliness during long-term COVID-19 home confinement and if extraversion would moderate this relationship. This (...) association has been explored by analysing the impact of COVID-19 pandemic and strict home confinement on social and emotional loneliness in 45 Spanish young adults. Diurnal cortisol levels were measured from five saliva samples obtained across a day just before the pandemic, and data about participants’ perceived loneliness, empathic state, extraversion, and prospective volunteering were obtained both before and during the confinement. Participants’ social and family loneliness increased during long-term strict home confinement, while prospective volunteering tendencies and extraversion decreased. Importantly, after adjusting for relevant confounders, moderation analyses revealed that in young adults with high pre-pandemic extraversion, a higher AUCG predicted a larger increase in social loneliness during confinement, while in individuals with low extraversion, AUCG was negatively related to change in loneliness. Our findings highlight the utility of pre-pandemic diurnal cortisol output in predicting the social impact of COVID-19 home confinement, presenting this hormone as a potential biomarker for a priori identification of at-risk groups during public health crises. (shrink)

Discussion of a “duty to recontact” emerged as technological advances left professionals considering getting back in touch with patients they had seen in the past. While there has been much discussion of the duty to recontact as a matter of theory and ethics, there has been rather little empirically based analysis of what this “duty” consists of. Drawing on interviews with 34 professionals working in, or closely with, genetics services, this paper explores what the “duty to recontact” means for healthcare (...) professionals involved in genetics. Using a discourse analytic framework, the paper identifies three system generated discourses on recontact (governance, legal and responsibilizing discourses) and three lifeworld discourses (situating recontact as a formal duty; more loosely as an obligation; and as a personal sense of responsibility). In summary, the paper shows that the “duty” to recontact involves a complex interplay of system responsibilities with professional duties, responsibilities and obligations. (shrink)

This article describes a new and innovative methodology for calibrating trust in ethical actions by Lethal Autonomous Weapon Systems (LAWS). For the foreseeable future, LAWS will require human operators for mission planning, decision-making, and supervisory control; yet humans lack the cognitive bandwidth and processing speed to make prompt, real-time ethical decisions. As a result, trustworthy Artificial Intelligence (AI) will be required to support ethical decision-making. We use a Bayesian ethical decision model for: (1) human setting of ethical preferences and thresholds (...) in accordance with Laws of War and tactical criteria; and (2) highlighting the factors that contribute to strike/no-strike recommendations for human evaluation. The model can perform an ethical analysis, provide a quantitative ethical strike/no-strike score, and recommend actions to reduce decision uncertainty. In this article, we describe successful initial evaluation trials of the Bayesian model and of a human interface for interaction with the model. Our Bayesian ethical decision model has an immediate application in wargames; the model can also be used to train operators in understanding the principles and key factors relevant to ethical decision-making; and it may eventually be used in actual military operations employing LAWS. (shrink)

For researchers and students interested in the connections between theoretically informed work and the possibilities for bettering people's everyday lives, this ...

While freedom has traditionally been discussed in philosophy and political theory, this paper proposes an anthropological approach to the study of freedom. The focus is on the Japanese word amae, which Takeo Doi calls the ‘key’ to Japanese culture and contrasts with the ‘Western’ concept of freedom. After discussing Doi’s influential work, meanings are reconstructed from interviews and group discussions with Japanese people about amae. The interviewees define amae literally in terms of social ‘non-independence’ and, unlike Doi, understand it in (...) a complex intertwining with freedom on the one hand and autonomy on the other. Overall, the paper argues that amae can hardly serve as a ‘key’ to understanding the Japanese, but can stimulate fruitful anthropological reflections not only on Japanese culture, but also on the concept of freedom. (shrink)

It is reported that medical students both in the U.S. and Poland have experience of interacting with pharmaceutical company representatives (pharma reps) during their school years. Studies have warned that the interaction typically initiated by the pharma reps’ general gift-giving eventually leads to the quid pro quo relationship between the pharma company and the future doctors, the result of which is that the doctors will prescribe their patients drugs in favor of the pharma company. Built upon the existing finding, this (...) research engages in analysis with three foci. The first is to compare attitudinal differences of the American and Polish medical students as they interact with pharma reps. Second, it investigates the role of the different economic and cultural elements (respectively in the U.S. and Poland) in the students’ attitudinal differences. Last, it suggests that the medical schools in both countries should have strict policies and effective education curriculum to help their students better prepare to interact ethically with pharma reps. Since there has been no direct comparative cultural analysis of this kind which is known in a published literature or report, the authors believe that the paper will serve as a catalyst for further research in the area. (shrink)

PrécisDespite significant scholarship, research, and funding dedicated to implementing criminal diversion programs over the past two decades, persons with serious mental illness and substance use disorders remain substantially overrepresented in United States jails and prisons. Why are so many U.S. adults with behavioral health problems incarcerated instead of receiving treatment and other support to recover in the community? In this paper, we explore this persistent problem within the context of “relentless unmet need” in U.S. behavioral health (Alegría et al., 2021).

COnstantien Sandis speaks to Nassim Taleb about inductive knowledge,black swans, Hume, Popper, and Wittgenstein.

Managers vs. Owners: The Struggle for Corporate Control in American Democracy deals with a subject of profound importance: understanding the place of the modern corporation in a democratic society. This latest volume in the acclaimed Ruffin Series in Business Ethics describes how the balance between corporate power and government regulation has changed with the interests of society as a whole. The first section examines the debates over the rules that individuals or organized groups would agree to follow in their interactions (...) to accrue social advantages. The second section looks at management's point of view and tells how law promotes the need for managerial collective action and provides a vocabulary for articulating management as a profession. The authors conclude by looking at the impact of collective investor action - especially institutional investors - on the efforts by managers to preserve their autonomy. This examination of the inherent conflicts between the interests of corporate owners, the interests of the larger society, and the interests of managers who run corporations will be essential reading for students, scholars, and professionals concerned with the place of the large corporation in a democratic society. (shrink)