As you face a life-defining change, you might ask yourself: Who will I become? This can be understood as a question about the nature and character of your future life, asked from your first person, or subjective, perspective. The nature and character of your conscious, first person, lived experience is a defining constituent of what it is like to be you. Framed this way, knowing the nature of your future lived experience is a way of knowing your future self. In (...) this paper, I explore this way of understanding one’s self and its implications for understanding life-defining changes in high-stakes contexts. My exploration of this way of understanding one’s self highlights the role of experience in grasping perceptual truths, and the importance of imagination, empathy, and testimony in self-understanding and prediction. (shrink)

Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)

IntroductionThis case study describes the process faculty at a large research university undertook to build a stand-alone online academic integrity course for first-year and transfer students. Because academic integrity is decentralized at the institution, building a more systematic program had to come from the bottom-up (faculty developed) rather than from the top down (institutionally mandated).Case descriptionUsing the learning management system, faculty and e-learning designers collaborated to build the course. Incorporating nuanced scenarios for six different types of misconduct (consistent with the (...) University’s Code of Student Rights, Responsibilities & Conduct), a pre- and post-test, and assessments for each scenario, the course provides experience in recognizing and avoiding academic misconduct.Discussion and evaluationAs a stand-alone course, the faculty who created it maintain control over content and are able to analyze student performance across the institution. In the ten months since its launch, the course has been eagerly adopted by faculty (n = 1853 students have completed the course) and post-test scores indicate students are learning from the course.ConclusionsAfter the successful launch of the student course, the next step, already underway, is the launch of learning modules for faculty and teaching assistants. (shrink)

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 debate over the temporal arrow is a debate over what fundamental ontology is needed for the temporal asymmetry of the universe, which determines the fact that time seems to be oriented or directed from earlier to later. This temporal asymmetry underlies (or, as some might argue, is the same as) the asymmetrical fact that the past is fixed while the future is open, as well as the global asymmetries of counterfactual, causal and agential direction. I explore the metaphysics of (...) the temporal direction within the context of empirical work in psychology and cognitive science. I argue that, in our debate over the metaphysics of the temporal arrow, we need to explore some of the deep connections between our cognitive response to the world and our metaphysical theory of the temporal direction. (shrink)

When people die suddenly and unexpectedly ethical issues often come to the fore. The aim of the study was to describe experiences of members of stroke teams in stroke units of ethical problems and how the teams manage the situation when caring for patients faced with sudden and unexpected death from stroke. Data were collected through four focus group interviews with 19 team members in stroke-unit teams, and analysed using interpretive content analysis. Three themes emerged from the analysis characterized by (...) information, decisions about care and support for the next-of-kin in the changing and uncertain situation, with mutual trust as the core. Mutual trust, both within the stroke team and with next-of-kin was seen by the stroke-team members as a way of handling ethical problems by administering care with the patient’s best interest at heart. (shrink)

The Johns Hopkins-Fogarty African Bioethics Training Program (FABTP) has offered a fully-funded, one-year, non-degree training opportunity in research ethics to health professionals, ethics committee members, scholars, journalists and scientists from countries across sub-Saharan Africa. In the first 9 years of operation, 28 trainees from 13 African countries have trained with FABTP. Any capacity building investment requires periodic critical evaluation of the impact that training dollars produce. In this paper we describe and evaluate FABTP and the efforts of its trainees.Our data (...) show that since 2001, the 28 former FABTP trainees have authored or co-authored 105 new bioethics-related publications; were awarded 33 bioethics-related grants; played key roles on 78 bioethics-related research studies; and participated in 198 bioethics workshops or conferences. Over the past nine years, trainees have collectively taught 48 separate courses related to bioethics and have given 170 presentations on various topics in the field. Many former trainees have pursued and completed doctoral degrees in bioethics; some have become editorial board members for bioethics journals. Female trainees were, on average, less experienced at matriculation and produced fewer post-training outputs than their male counterparts. More comprehensive studies are needed to determine the relationships between age, sex, previous experience and training program outputs. (shrink)

Nikolai Fedorovich Fedorov is one of the most original and as yet inadequately studied Russian thinkers. Neither a professional philosopher, nor a well-known scholar, nor a critical essayist, he led a kind of double existence while working as an ordinary civil servant, developing his original philosophy at his leisure in the hours free from his intensive daily work. Fedorov's life was one of selflessness and self-denial, not at all eventful outwardly. He graduated from the Gymnasium in Tambov and completed three (...) years of study in the Law Department of the Richelieu Lyceum in Odessa, after which he taught for a number of years in the Borovsk, Lipetsk, Podol'sk, and other regional schools. The quarter century he spent working in the Library of the Rumiantsev Museum in Moscow was the most stable period in Fedorov's life. Fedorov's ideas attracted the attention of outstanding cultural figures. F.M. Dostoevskii became acquainted with them in 1878 through Peterson, and on March 24 of that year he wrote: "I am essentially in full accord with these ideas. I read them as if they were my own." L.N. Tolstoy, who knew Fedorov personally, said, "I am proud to be living in the same times as such a man." V.S. Solov'ev, who also associated with Fedorov, wrote to him as follows in the mid-1880s: "Your ‘project’ is the human spirit's first advance along the path of Christ since the advent of Christianity. As for me, I can only acknowledge you as my teacher and spiritual father." A.M. Gorky was especially impressed by the activism in Fedorov's views. But none of this precludes the many and very essential divergences of these authors from Fedorov. One can find some links with his ideas in A.N. Belyi, V. Ia. Briusov, N.A. Zabolotskii, V.V. Maiakovskii, A.P. Platonov, M.M. Prishvin, I.L. Sel'vinskii, O.D. Forsh, and V.N. Khlebnikov. The artist B.N. Chekrygin drafted a large fresco entitled The Resurrection of the Dead [Voskreshenie mertvykh] and a philosophical work entitled The Synod of the Resurrecting Museum [Sobor voskreshaiushchego muzeia], both inspired by Fedorov's teachings. (shrink)

In the period of decolonisation that followed the end of the Second World War a number of scholars, mainly Middle Eastern, launched a sustained assault on Orientalism - the theory and practice of representing 'the Orient' in Western thought -accusing its practitioners of misrepresentation, prejudice and bias. As a result an intense debate occurred regarding the validity of the charges made, involving not only Orientalists but students of history, anthropology, sociology, women's studies and the media. Orientalism: A Reader provides the (...) student with a selection of key readings from this debate, covering a range of areas including myth, imperialism, the cultural perspective, Marxist interpretation and feminist attitudes.The origins and character of the debate on Orientalism are introduced, as well as the intellectual foundations of the assault made and the nature of the debate which ensued. Coverage begins with nineteenth-century material from thinkers such as Hegel and Marx, and moves through extracts from Nietzsche, Gramsci and Foucault to contemporary work from, for example, Bryan Turner, John MacKenzie and Edward Said. As well as a general introduction, each section is introduced and the extracts are placed in context to guide the student carefully through this complex debate. (shrink)

Recalling the banishment of Russian philosophers in 1921, Boris Zaitsev remarked "only Shpet is forgotten." But Gustav Gustavovich Shpet was not "forgotten" and he was not the only one who succeeded in avoiding expulsion at that time. Among the humanists of prerevolutionary-stamp who continued to work in Soviet Russia after 1922, we can list P.P. Blonskii, A. A. Bogdanov, A.N. Giliarov, S.A. Zhebelev , A.F. Losev, V.N. Ivanovskii, R.V. Ivanov-Razumnik, N.I. Kareev, A.O. Makovel'skii, V.N. Murav'ev, E.L. Radlov, B.G. Stolpner, P.A. (...) Florenskii, B.A. Fokht, G.I. Chelpanov, PS. Iushkevich: almost all of them were philosophers. (shrink)

It is important to recognize that the problem dealt with by Plato in the central part of the Sophist is one which arises from the use of certain Greek phrases, and has no necessary or direct connexion with metaphysics. We tend to obscure this fact if we use English terms such as ‘Being’, ‘Reality’, ‘Existence’, etc., in discussing the dialogue, and indeed make it almost impossible to understand what Plato is trying to do. It is the way in which die (...) Greek terms ỗν and μή ỗν and other such terms are used by the ‘sophists’ which gives rise to the problem. (shrink)