Freedom as Non-domination and Democratic Inclusion

According to neo-republicans, democracy is morally justified because it is among the prerequisites for freedom as non-domination. The claim that democracy secures freedom as non-domination needs to explain why democratic procedures contribute to non-domination and for whom democracy secures non-domination. This requires an account of why domination is countered by democratic procedures and an account of to whom domination is countered by access to democratic procedures. Neo-republican theory of democracy is based on a detailed discussion of the former but a scant discussion of the latter. We address this lacuna by interpreting the two most influential principles of inclusion, the all-subjected principle and the all-affected principle, in light of neo-republican commitments. The preliminary conclusion is that both principles are able to capture relations of domination between the democratic state and the people controlled by it in the relevant sense. Yet, the state has virtually unlimited powers to control residents, but only limited powers to interfere in the lives of non-residents. Republican aspirations are therefore more in tune with the all-subjected principle according to which only residents in the territory of the state should be granted rights to political participation.     

HIV infection in the South African construction industry

South Africa has one of the highest HIV prevalences in the world, and compared with other sectors of the national economy, the construction industry is disproportionately adversely affected. Using data collected nationally from more than 57,000 construction workers, HIV infection among South African construction workers was estimated, together with an assessment of the association between worker HIV serostatus and worker characteristics of gender, age, nature of employment, occupation, and HIV testing history. The HIV infection of construction workers was estimated to be lower than that found in a smaller 2008 sample. All worker characteristics are significantly associated with HIV serostatus. In terms of most at-risk categories: females are more at risk of HIV infection than males; workers in the 30–49 year old age group are more at risk than other age groups; workers employed on a less permanent basis are more at risk; as are workers not having recently tested for HIV. Among occupations in the construction industry, general workers, artisans, and operator/drivers are those most at risk. Besides yielding more up-to-date estimated infection statistics, this research also identifies vulnerable sub-groups as valuable pointers for more targeted workplace interventions by construction firms.     

Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine

The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine” (DM) (big data, data mining). The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new vision of care. Molecular tumor boards (MTB) are one response to these changes and are now providing better access to next-generation sequencing (NGS) and new cancer treatments to patients with inoperable or metastatic cancers, and those for whom the usual treatment has failed. However, MTB face a crucial ethical challenge: maintaining and improving the trust of patients, clinicians, researchers and industry in academic medical centers supported by private or public funding rather than providing genetic data directly to private companies. We believe that, in this era of DM, appropriate modern digital communication networks will be required to maintain this trust and to improve the organization and effectiveness of the system. There is, therefore, a need to reconsider the form and content of informed consent (IC) documents at all academic medical centers and to introduce dynamic and electronic informed consent (e-IC).     

Using Surplus Embryos and Research Embryos in Stem Cell Research: Ethical Viewpoints of Buddhist,Hindu and Catholic Leaders in Malaysia on the Permissibility of Research

The sources of embryos for Embryonic Stem Cell Research (ESCR) include surplus embryos from infertility treatments, and research embryos which are created solely for an ESCR purpose. The latter raises more ethical concerns. In a multi-religious country like Malaysia, ethical discussions on the permissibility of ESCR with regard to the use surplus and research embryos are diversified. Malaysia has formulated guidelines influenced by the national fatwa ruling which allows the use of surplus embryos in ESCR. Input from other main religions is yet to be documented. In light of this, this study addresses (i) the ethical viewpoints of Buddhist, Hindu and Catholic leaders on the permissibility of using surplus and research embryos; and (ii) the moral standpoints of religious leaders towards attaining a consensus on the practice of ESCR in Malaysia. Responses from the religious leaders were obtained via semi-structured, face-to-face interviews. The findings show that generally the Buddhist and Hindu leaders approve the use of surplus embryos. Their responses on the creation of research embryos for ESCR are varied. Meanwhile, the Catholic leaders distinctively objected to ESCR regardless of the embryo sources, referring to it as the destruction of life. Taking into account the diverse views, this study explores the response of the religious leaders for a general consensus wherever possible. The ethical discourse surrounding ESCR in a multi-religious setting offers new perspective, which needs to be explored in a broader global community.     

Mentoring for Responsible Research: The Creation of a Curriculum for Faculty to Teach RCR in the Research Environment

Despite more than 25 years of a requirement for training in the responsible conduct of research (RCR), there is still little consensus about what such training should include, how it should be delivered, nor what constitutes “effectiveness” of such training. This lack of consensus on content, approaches and outcomes is evident in recent data showing high variability in the development and implementation of RCR instruction across universities and programs. If we accept that one of the primary aims of instruction in RCR/research ethics is “to foster a community of social responsibility” (Antes et al. 2009: 398), then it makes sense to consider the research environment itself—where learning one’s science happens where one also engages in social interaction around that science. In order to take the best advantage of that already existing/naturally occurring research environment, the authors, through a deliberative, collaborative, and integrative process, crafted a workshop curriculum meant to arm research faculty with concrete and specific tools to effectively introduce research ethics in the context of the research environment.     

Respecting Context to Protect Privacy: Why Meaning Matters

In February 2012, the Obama White House endorsed a Privacy Bill of Rights, comprising seven principles. The third, “Respect for Context,” is explained as the expectation that “companies will collect, use, and disclose personal data in ways that are consistent with the context in which consumers provide the data.” One can anticipate the contested interpretations of this principle as parties representing diverse interests vie to make theirs the authoritative one. In the paper I will discuss three possibilities and explain why each does not take us far beyond the status quo, which, regulators in the United States, Europe, and beyond have found problematic. I will argue that contextual integrity offers the best way forward for protecting privacy in a world where information increasingly mediates our significant activities and relationships. Although an important goal is to influence policy, this paper aims less to stipulate explicit rules than to present an underlying justificatory, or normative rationale. Along the way, it will review key ideas in the theory of contextual integrity, its differences from existing approaches, and its harmony with basic intuition about information sharing practices and norms.     

Surveillance,Self and Smartphones: Tracking Practices in the Nightlife

This paper is the result of the EMERGING ICT FOR CITIZEN VEILLANCE-workshop organized by the JRC, Ispra, Italy, March 2014. The aim of this paper is to explore how the subject participates in surveillance situations with a particular focus on how users experience everyday tracking technologies and practices. Its theoretical points of departure stem from Surveillance Studies in general and notions of participatory surveillance (Albrechtslund 2008) and empowering exhibitionism (Koskela in Surveill Soc 2(2/3):199–215, 2004) in particular. We apply these theoretical notions on smartphones and its users to investigate the combination of participation and surveillance. Empirically, the paper uses interviews held with urban nightlife visitors to uncover practices of smartphone use. This qualitative and explorative study contributes to the concept of participatory surveillance by discussing to what extent smartphone-users’ actions and motivations can be seen as forms of surveillance and how that influences these actors in a (nightly) public space. We finish by setting out directions for studying mobile technologies of the self.     

Religious polarization: contesting religion in secularized Western European countries

In light of recent claims about increasing religious polarization in secularized countries, we study the extent to which the non-religious contest religion in Western European countries and whether and how the Protestant and Catholic heritage of these countries plays a role in this. Analyzing data from the International Social Survey Program (ISSP 1998 and 2008) data by means of multilevel analysis, we demonstrate that religious polarization is stronger in the most secularized countries and in countries with a Catholic religious heritage. Moreover, in secular countries, polarization stems from religious fervency, whereas in countries with a Catholic heritage, it stems from anti-religious fervency.     

Why Frankenstein is a Stigma Among Scientists

As one of the best known science narratives about the consequences of creating life, Mary Shelley’s Frankenstein; or, The Modern Prometheus (1818) is an enduring tale that people know and understand with an almost instinctive familiarity. It has become a myth reflecting people’s ambivalent feelings about emerging science: they are curious about science, but they are also afraid of what science can do to them. In this essay, we argue that the Frankenstein myth has evolved into a stigma attached to scientists that focalizes the public’s as well as the scientific community’s negative reactions towards certain sciences and scientific practices. This stigma produces ambivalent reactions towards scientific artifacts and it leads to negative connotations because it implies that some sciences are dangerous and harmful. We argue that understanding the Frankenstein stigma can empower scientists by helping them revisit their own biases as well as responding effectively to people’s expectations for, and attitudes towards, scientists and scientific artifacts. Debunking the Frankenstein stigma could also allow scientists to reshape their professional identities so they can better show the public what ethical and moral values guide their research enterprises.