Background Residual dried blood spots 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 and a survey 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)
BackgroundIn the Canadian Alliance for Healthy Hearts and Minds cohort, participants underwent magnetic resonance imaging of the brain, heart, and abdomen, that generated incidental findings. The approach to managing these unexpected results remain a complex issue. Our objectives were to describe the CAHHM policy for the management of IFs, to understand the impact of disclosing IFs to healthy research participants, and to reflect on the ethical obligations of researchers in future MRI studies.MethodsBetween 2013 and 2019, 8252 participants were recruited with (...) a follow-up questionnaire administered to 909 participants at 1-year. The CAHHM policy followed a restricted approach, whereby routine feedback on IFs was not provided. Only IFs of severe structural abnormalities were reported.ResultsSevere structural abnormalities occurred in 8.3% of participants, with the highest proportions found in the brain and abdomen. The majority of participants informed of an IF reported no change in quality of life, with 3% of participants reporting that the knowledge of an IF negatively impacted their quality of life. Furthermore, 50% reported increased stress in learning about an IF, and in 95%, the discovery of an IF did not adversely impact his/her life insurance policy. Most participants would enrol in the study again and perceived the MRI scan to be beneficial, regardless of whether they were informed of IFs. While the implications of a restricted approach to IF management was perceived to be mostly positive, a degree of diagnostic misconception was present amongst participants, indicating the importance of a more thorough consent process to support participant autonomy.ConclusionThe management of IFs from research MRI scans remain a challenging issue, as participants may experience stress and a reduced quality of life when IFs are disclosed. The restricted approach to IF management in CAHHM demonstrated a fair fulfillment of the overarching ethical principles of respect for autonomy, concern for wellbeing, and justice. The approach outlined in the CAHHM policy may serve as a framework for future research studies.Clinical trial registrationhttps://clinicaltrials.gov/ct2/show/nct02220582. (shrink)
Among the most outstanding discoveries of the last century is one that is not quite as momentous as the theory of relativity or cybernetics. It may even still be enigmatic. It has no one single author, it is not expressed in a single formula, conception, or invention. Nonetheless it is worth all the others combined.
[Adapted from publisher-provided promotional materials by English Book Review Editor, Janny HC Leung]M. Catherine Gruber (2014) I’m Sorry for What I’ve Done: The Language of Courtroom Apologies. Oxford University Press, USA, ISBN: 978-0-19-932566-5This book examines 52 apologetic allocutions produced during federal sentencing hearings. The practice of inviting defendants to make a statement in their own behalf is a long-standing one and it is understood as offering defendants the opportunity to impress a judge or jury with their remorse, which could (...) be a factor in the sentence that is imposed. Defendants raised the topics of the offense, mitigation, future behaviour and the sentence in different ways and this book explores the pros and cons associated with the different strategies that they used. Based on corpus data, Gruber argues that the application of Austin’s (1962) performative–constative continuum reveals that offense-related utterances that fall closer to the constative end are.. (shrink)
In 2005 St Andrews Studies published a volume of essays by Anscombe entitled Human Life, Action and Ethics, followed in 2008 by a second with the title Faith in a Hard Ground. Both books were highly praised. This third volume brings essays on the thought of historical philosophers in which Anscombe engages directly with their ideas and arguments. Many are published here for the first time and the collection provides further testimony to Anscombe’s insight and intellectual imagination.
Abstract G.A. Cohen has produced an influential criticism of libertarian?ism that posits joint ownership of everything in the world other than labor, with each joint owner having a veto right over any potential use of the world. According to Cohen, in that world rationality would require that wealth be divided equally, with no differential accorded to talent, ability, or effort. A closer examination shows that Cohen's argument rests on two central errors of reasoning and does not support his egalitarian conclusions, (...) even granting his assumption of joint ownership. That assumption was rejected by Locke, Pufendorf and other writers on property for reasons that Cohen does not rebut. (shrink)
This article examines the main aspects of Husserl's phenomenology, which are analyzed in "Appearance and Sense" by Gustav Shpet: the relation between sense and comprehension and between noesis and noema. Shpet emphasizes the hermeneutical theme of "comprehension" as a resolutive dimension to solve aspects not clarified by Husserl. Shpet's critical enquiry, in the course of his subsequent observation, converge into an hermeneutical logic. Shpet identifies the centrality of language as a form of thinking, through the recovery of Humbodt's meaning of (...) the "inner form". (shrink)
The theoretical and practical problems of providing incentives for people's activity in society are becoming increasingly more urgent as the role of the human factor in the development of society grows. In light of modern historical experience, we can see the onesidedness of conceptions according to which the types and directions of activity are mechanically predetermined by conditions external to it, and we can see the necessity of understanding the laws of activity itself in all their complicated dialectical essence. These (...) problems have become particularly important at the present stage of development of Soviet society, when a greater active involvement of the masses and profound changes in social psychology are becoming acutely necessary. (shrink)