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)

The current article aims to provide an up-to-date synopsis of available techniques to study affect dynamics using intensive longitudinal data. We do so by introducing the following eight dichotomies that help elucidate what kind of data one has, what process aspects are of interest, and what research questions are being considered: single- versus multiple-person data; univariate versus multivariate models; stationary versus nonstationary models; linear versus nonlinear models; discrete time versus continuous time models; discrete versus continuous variables; time versus frequency domain; (...) and modeling the process versus computing descriptives. In addition, we discuss what we believe to be the most urging future challenges regarding the modeling of affect dynamics. (shrink)

We propose a new approach for tracing value change. Value change may lead to a mismatch between current value priorities in society and the values for which technologies were designed in the past, such as energy technologies based on fossil fuels, which were developed when sustainability was not considered a very important value. Better anticipating value change is essential to avoid a lack of social acceptance and moral acceptability of technologies. While value change can be studied historically and qualitatively, we (...) propose a more quantitative approach that uses large text corpora. It uses probabilistic topic models, which allow us to trace values that are latent. We demonstrate the approach for five types of value change in technology. Our approach is useful for testing hypotheses about value change, such as verifying whether value change has occurred and identifying patterns of value change. The approach can be used to trace value change for various technologies and text corpora, including scientific articles, newspaper articles, and policy documents. (shrink)

Alongside concerns for animal welfare, concerns for land, water, and climate are undermining established food identities in many parts of the world. In Aotearoa New Zealand, agrifood relations are bound tightly into national identities and the materialities of export dependence on dairying and agriculture more widely. Dairy/ing identities have been central to national development projects and the politics that underpin them for much of New Zealand’s history. They are central to an intransigent agrifood political ontology. For the last decade, however, (...) they have been challenged by the identity politics of ethical food consumption. This paper explores the ensuing contests and asks how they are reshaping agrifood identities. We draw on interviews with 15 participants in Aotearoa New Zealand who have made dietary transitions that reduce or exclude dairy products. Our aim is not to identify a new post-dairying identity or claim a reconfigured national identity, but to examine the collision of production-consumption values in the context of a dominant place-based food identity. We ask how participants navigate contradictory commitments to becoming ‘good environmental citizens’ whilst remaining ‘good national citizens’. The paper offers insights for examining similar struggles elsewhere and the potential to shift agrifood relations and undermine entrenched political ontologies through ethical food consumption values. (shrink)

Background and objective: Code status discussions may fail to address patients’ treatment-related goals and their knowledge of cardiopulmonary resuscitation (CPR). This study aimed to investigate patients’ resuscitation preferences, knowledge of CPR and goals of care. Design, setting, patients and measurements: 135 adults were interviewed within 48 h of admission to a general medical service in an academic medical centre, querying code status preferences, knowledge about CPR and its outcome probabilities and goals of care. Medical records were reviewed for clinical information (...) and code status documentation. Results: 41 (30.4%) patients had discussed CPR with their doctor, 116 (85.9%) patients preferred full code status and 11 (8.1%) patients expressed code status preferences different from the code status documented in their medical record. When queried about seven possible goals of care, patients affirmed an average of 4.9 goals; their single most important goals were broadly distributed, ranging from being cured (n = 36; 26.7%) to being comfortable (n = 8; 5.9%). Patients’ mean estimate of survival to discharge after CPR was 60.4%. Most patients believed it was helpful to discuss goals of care (n = 95; 70.4%) and the chances of surviving inhospital CPR (n = 112; 83.0%). Some patients expressed a desire to change their code status after receiving information about survival following inhospital CPR (n = 11; 8.1%) or after discussing goals of care (n = 2; 1.5%). Conclusions: Doctors need to address patients’ knowledge about CPR and take steps to avoid discrepancies between treatment orders and patients’ preferences. Addressing CPR outcome probabilities and goals of care during code status discussions may improve patients’ knowledge and influence their preferences. (shrink)

The aim of this study was to synthesize the concepts from empirical studies and analyze, compare and interrelate them with normative ethics. The International Council of Nurses (ICN) and the Health and Medical Service Act are normative ethics. Five concepts were used in the analysis; three from the grounded theory studies and two from the theoretical framework on normative ethics. A simultaneous concept analysis resulted in five outcomes: interconnectedness, interdependence, corroboratedness, completeness and good care are all related to the empirical (...) perspective of the nurse’s interaction with the older patient, and the normative perspective, i.e. that found in ICN code and SFS law. Empirical ethics and normative ethics are intertwined according to the findings of this study. Normative ethics influence the nurse’s practical performance and could be supporting documents for nurses as professionals. (shrink)

In recent year bourgeois scholars have given much attention to the analysis of various systems of knowledge as products of societal development which exercise vast influence upon all spheres of the life of society. This should cause no surprise. In our day, when it has become obvious that ideas are intimately connected with classes, that is, that the content of ideas is closely bound up with the needs, objectives, and interests of classes, an epistemology which ignores the societal aspect of (...) knowledge can no longer win confidence. The concept of an "epistemological Robinson Crusoe" living on an uninhabited island of Truth reveals ever more explicitly its unfitness to explain the present facts concerning the development, transmission, and dissemination of ideas. (shrink)

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)

The word ‘existentialism’ has become something of a catchword in religious circles today, and one suspects that it is sometimes a substitute rather than a medium for thought. Most theological teachers must from time to time have received from a pupil an essay in which the words ‘existential’, ‘existentially’ and ‘existentialism’ appear to have been sprinkled from a pepper-pot over an exposition whose meaning would remain unchanged if these words were excised altogether. Nevertheless, usum non tollit abusus, and the following (...) rather unsystematic remarks may perhaps be of some help in elucidating and evaluating a mode of thought and expression which has attracted the interest of some of the more profound, as well as of some of the more superficial, theological and philosophical writers of the present day. (shrink)