Background Residual dried blood spots (rDBS) from newborn screening programmes represent a valuable resource for medical research, from basic sciences, through clinical to public health. In Hong Kong, there is no legislation for biobanking. Parents’ view on the retention and use of residual newborn blood samples could be cultural-specific and is important to consider for biobanking of rDBS. Objective To study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese (...) parents. Methods A mixed-method approach was used to study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese parents of children 0–3 years or expecting parents through focus groups (8 groups; 33 participants) and a survey (n = 1012, 85% mothers) designed with insights obtained from the focus groups. We used framework analysis to summarise the themes as supportive factors, concerns and critical arguments for retention and secondary use of rDBS from focus group discussion. We used multiple logistic regression to assess factors associated with support for retention and secondary use of rDBS in the survey. Results Both in focus groups and survey, majority of parents were not aware of the potential secondary use of rDBS. Overall secondary use of rDBS in medical research was well accepted by a large proportion of Hong Kong parents, even if all potential future research could not be specified in a broad consent. However parents were concerned about potential risks of biobanking rDBS including leaking of data and mis-use of genetic information. Parents wanted to be asked for permission before rDBS are stored and mainly did not accept an “opt-out” approach. The survey showed that parents born in mainland China, compared to Hong Kong born parents, had lower awareness of newborn screening but higher support in biobanking rDBS. Higher education was associated with support in rDBS biobanking only among fathers. Conclusion Long-term storage and secondary use of rDBS from newborn screening for biomedical research and a broad consent for biobanking of rDBS are generally acceptable to Hong Kong parents given their autonomy is respected and their privacy is protected, highlighting the importance of an accountable governance and a transparent access policy for rDBS biobanks. (shrink)

This article examines what happens when local gender rights activism is taken up by international allies and appropriators, using case studies of activism in Saudi Arabia and India. The relationship between local and transnational activists is shaped by histories of Euro-Americans writing about the gendered organisation of Eastern societies. In an economic system where nongovernmental activist groups compete for donor support, political causes are commodities with value, and value is generated through representations (e.g. of patriarchal oppression). These representations of the (...) sexuality and gender organisation of other societies are fetishes in the Marxian sense, essential to the commodity-cause that generates value in circulation. These representations gain value through the accretion of cultural images and texts that adhere to the cause, e.g. the stereotype of the violent brown man and oppressed woman. Such images in the cultural repository allow transnational consumers to make sense of issues they are called to support. But such images also reify stereotypes that activists seek to undermine, even at the same time that these representations generate an international audience. We analyse this process and identify strategies for how transnational allies can show solidarity without overshadowing or devaluing the voices of local activists, with primary focus on the case of activism against male guardianship laws in Saudi Arabia. (shrink)

This paper provides a series of reflections on making the case to senior leaders for the introduction of clinical ethics support services within a UK hospital Trust at a time when clinical ethics committees are dwindling in the UK. The paper provides key considerations for those building a case for clinical ethics support within hospitals by drawing upon published academic literature, and key reports from governmental and professional bodies. We also include extracts from documents relating to, and annual reports of, (...) existing clinical ethics support within UK hospitals, as well as extracts from our own proposal submitted to the Trust Board. We aim for this paper to support other ethicists and/or health care staff contemplating introducing clinical ethics support into hospitals, to facilitate the process of making the case for clinical ethics support, and to contribute to the key debates in the literature around clinical ethics support. We conclude that there is a real need for investment in clinical ethics in the UK in order to build the evidence base required to support the wider introduction of clinical ethics support into UK hospitals. Furthermore, our perceptions of the purpose of, and perceived needs met through, clinical ethics support needs to shift to one of hospitals investing in their staff. Finally, we raise concerns over the optional nature of clinical ethics support available to practitioners within UK hospitals. (shrink)

In Working Virtue: Virtue Ethics and Contemporary Moral Problems, leading figures in the fields of virtue ethics and ethics come together to present the first ...

Our knowledge of the human brain and the influence of pharmacological substances on human mental functioning is expanding. This creates new possibilities to enhance personality and character traits. Psychopharmacological enhancers, as well as other enhancement technologies, raise moral questions concerning the boundary between clinical therapy and enhancement, risks and safety, coercion and justice. Other moral questions include the meaning and value of identity and authenticity, the role of happiness for a good life, or the perceived threats to humanity. Identity and (...) authenticity are central in the debate on psychopharmacological enhancers. In this paper, I first describe the concerns at issue here as extensively propounded by Carl Elliott. Next, I address David DeGrazia’s theory, which holds that there are no fundamental identity-related and authenticity-related arguments against enhancement technologies. I argue, however, that DeGrazia’s line of reasoning does not succeed in settling these concerns. His conception of identity does not seem able to account for the importance we attach to personal identity in␣cases where personal identity is changed through enhancement technology. Moreover, his conception of authenticity does not explain the reason why we find inauthentic values objectionable. A broader approach to authenticity can make sense of concerns about changes in personal identity by means of enhancement technologies. (shrink)

Taubes, Badiou, Agamben, Žižek, Reinhard, and Santner have found in the Apostle Paul's emphasis on neighbor-love a positive paradigm for politics. By thoroughly reexamining Pauline eschatology, L. L. Welborn suggests that neighbor-love depends upon an orientation toward the messianic event, which Paul describes as the "now time" and which he imagines as "awakening." Welborn compares the Pauline dialectic of awakening to attempts by Hellenistic philosophers to rouse their contemporaries from moral lethargy and to the Marxist idea of class consciousness, emphasizing (...) the apostle's radical spirit and moral relevance. (shrink)