BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...) a European research consortium demonstrate a gap between the aims of the regulation and its effects in practice. Namely, strictly formalised data protection requirements may cause routinisation among researchers instead of substantive ethical reflection, and may crowd out trust between actors in the health data research ecosystem; while harmonisation across Europe and data sharing between countries is hampered by different interpretations of the law, which partly stem from different views about ethical values. Then, building on these observations, we use theory to argue that the concept of trust provides an escape from the privacy-solidarity debate. Lastly, the paper details three aspects of trust that can help to create a responsible research environment and to mitigate the encountered challenges: trust as multi-agent concept; trust as a rational and democratic value; and trust as method for priority setting. Mutual cooperation in research—among researchers and with data subjects—is grounded in trust, which should be more explicitly recognised in the governance of health data research. (shrink)

Deepfakes are hyper-realistic but fabricated videos created with the use of artificial intelligence. In the context of psychotherapy, the first studies on using deepfake technology are emerging, with potential applications including grief counselling and treatment for sexual violence-related trauma. This paper explores these applications from the perspective of medical ethics and health law. First, we question whether deepfake therapy can truly constitute good care. Important risks are dangerous situations or ‘triggers’ to the patient during data collection for the creation of (...) a deepfake, and when deepfake therapy is started, there are risks of overattachment and blurring of reality, which can complicate the grieving process or alter perceptions of perpetrators. Therapists must mitigate these risks, but more research is needed to evaluate deepfake therapy’s efficacy before it can be used at all. Second, we address the implications for the person depicted in the deepfake. We describe how privacy and portrait law apply and argue that the legitimate interests of those receiving therapy should outweigh the interests of the depicted, as long as the therapy is an effective and ‘last resort’ treatment option, overseen by a therapist and the deepfakes are handled carefully. We suggest specific preventative measures that can be taken to protect the depicted person’s privacy. Finally, we call for qualitative research with patients and therapists to explore dependencies and other unintended consequences. In conclusion, while deepfake therapy holds promise, the competing interests and ethicolegal complexities demand careful consideration and further investigation alongside the development and implementation of this technology. (shrink)

This volume offers the first-ever complete English translation of Leibniz’s Dissertatio De Arte Combinatoria together with a critical edition of the original Latin text on fa...

This paper contends that internalism with respect moral motivation (the view that we are always moved to act in accordance with our moral judgments) is wrong. While internalism can accommodate amoralists, it cannot explain the phenomenon of ‘part-time moralists’ — the person who is (ostensibly at least) moved by some of his or her moral judgments but not others — and hence should be rejected. This suggests that moral judgments are beliefs (or conscious representations) as opposed to desires. It is (...) contended that morality consists of the set of principles which will maximise happiness and that our moral consciousness is motivated when a desire to maximise happiness is copresent with such a belief. Finally, it is argued that this does not entail that morality is a subjective or relative concept. (shrink)

Quilts with "a black-and-white checked" pattern "for the NASCAR market" are stitched together by an Amish woman whose family uses an outdoor privy because church rules stipulate "no indoor plumbing"; an Amish man delivers cans of his milk to an Amish-owned neighborhood collection tank cooled by electricity because state laws require the refrigeration of milk. These are just a few of the images Karen Johnson-Weiner presents of the New York State Amish and their continuing effort to maintain a life disconnected (...) from the surrounding society upon which they are, to varying degrees, economically dependent. The Amish's struggle to preserve separate-from-the world communities and the diversity among the various Amish... (shrink)

A comprehensive, critical evaluation of the ideas of the Italian philosopher Benedetto Croce, including a summary of his life.

: The aims of this research is to find out the connection between burnout and organizational factors, including work overload, lack of control, insufficient reward, breakdown of community, absence of fairness and conflicting value. The participants are 191 school teachers. The data were collected by using questionnaires and to be analyzed by pearson product moment correlation. The result indicated the more negative organizational factors perceived by teachers, the higher level of burnout.  .

First published in 2002. Routledge is an imprint of Taylor & Francis, an informa company.

Although contemporary sociologists of science have sometimes claimed Max Weber as a methodological precursor, they have not examined Weber's own writings about science. Between 1908 and 1912 Weber published a series of critical studies of the extension of scientific authority into public life. The most notable of these concerned attempts to implement the experimental psychology or psycho-physics laboratory in factories and other real-world settings. Weber's critique centered on the problem of social measurement. He emphasized the discontinuities between the space of (...) the laboratory and that of the factory, showing how several qualitative and historically conditioned differences between the two settings rendered the transfer of instruments and methods between them highly problematic. Weber's critical arguments prepared the ground for his greatest foray into empirical sociology, a survey he directed for the Verein fur Sozialpolitik investigating the conditions and attitudes affecting the lives and performance of industrial workers. Using a different measuring instrument - the questionnaire - Weber tried to implement a concept of social measurement which implied a different ontology, drawn not from natural sciences but from the historical sciences. (shrink)

Книгу характеризует широкий охват затронутых проблем, глубина анализа, оригинальность подхода, многоаспектность освещения материала. Для специалистов.

On various principles of economics in an Islamic society.

Tarekat teaches its followers not to glorify conglomerates, to keep their distance from leader, and to live in a way of zuhud, including in the matters of politics. But the Tarekat Qadiriyah wa Naqsyabandiyah in Cukir Jombang was actually involved in practical politics as a supporter of Partai Persatuan Pembangunan. This paper, which was written in the form of ethnographic design according to the concept of the power relations of Foucault to find new perspectives about the actions of Tarekat communities (...) in politics, in this case explaining the pattern of relations that occurred between the Tarekat Cukir and PPP and discovering the factors causing Tarekat Cukir to support PPP. This paper concludes that between Tarekat Cukir and PPP, there is a mutually beneficial pattern of relations in terms of proximity, but in terms of economic politics, the Tarekat Cukir feels disadvantaged. The dominant reason the Tarekat Cukir supports PPP is because of the dependence of Santri on their Mursyid who is a PPP politician. This is reinforced by the history between the two parties and the spiritual ties that connect the teachers who are both PPP politicians and Santris. (shrink)

This Book Brings A Clear And Insightful Presentation Of The Wisdom Of Hinduism In All Its Fundamental Principles.