This study considered the range of ethical issues and potential stakeholder priorities associated with the application of genomic technologies applied to animal production systems, in particular those which utilised genomic technologies in accelerated breeding rather than the application of genetic modification. A literature review was used to inform the development of an ethical matrix, which was used to scope the potential perspectives of different agents regarding the acceptability of genomic technologies, as opposed to genetic modification techniques applied to animal production (...) systems. There are very few studies carried out on stakeholder attitudes regarding the application of genomics to animal production in the human food chain and it may be that this technology is perceived as no more than an extension of traditional breeding techniques. While this is an area which needs more research, it would appear from this study that genomics, because it avoids many of the disadvantages and consumer perceptions associated with GM, is likely to prove a more publicly acceptable route than is GM for the development of healthier and more productive animals. However, stakeholders also need to have an approach to the moral status of the animals involved that finds credibility and acceptability with civil society. (shrink)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (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)

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance Scheme offers an apt (...) moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability. (shrink)

The first edition of The Mismeasure of Man appeared in 1981 and was quickly praised in the popular press as a definitive refutation of 100 years of scientific work on race, brain-size and intelligence. It sold 125,000 copies, was translated into 10 languages, and became required reading for undergraduate and even graduate classes in anthropology, psychology, and sociology. The second edition is not truly revised, but rather only expanded, as the author claims the book needed no updating as any new (...) research would only be plagued with the same philosophical errors revealed in the first edition. Thus it continues a political polemic, whose author engages in character assassination of long deceased scientists whose work he misrepresents despite published refutations, while studiously witholding from his readers fifteen years of new research that contradicts every major scientific argument he puts forth. Specific attention in this review are given to the following topics: the relationship between brain size and IQ, the importance of the scientific contributions of Sir Francis Galton, S. G. Morton, H. H. Goddard, and Sir Cyril Burt, the role of early IQ testers in determining U.S. immigration policy, The Bell Curve controversy and the reality of g, race /sex/social class differences in brain size and IQ, Cesare Lombroso and the genetic basis of criminal behavior, between-group heritabilities, inter-racial adoption studies, and IQ why evolutionary theory predicts group differences, and the extent to which Gould's political ideology has affected his scientific work. (shrink)

Inhaltsverzeichnis Siglenverzeichnis Christoph Binkelmann: Einleitung Hartmut Traub: J. G. Fichte: Eine Philosophen-Identität zwischen Politik und Wissenschaft Nationale Identität Peter L. Oesterreich: ¿Deutscher Ernst¿. Zu Fichtes rhetorischer Erfindung nationaler Identität Tilman Reitz: Die Nation als geistiger Wirkungsraum der Philosophie. Fichtes kulturpolitische Wende Cristiana Senigaglia: Der Begriff der Nation am Scheideweg: Fichtes ¿Reden¿ und ihre Bedeutung Marco Rampazzo Bazzan: Unter der Konjunktur denken: Fichtes Auseinandersetzung mit Machiavelli Jean-Christophe Goddard: Fichte oder der ständige Aufstand der Ureinwohner Soziale Identität Roberta Picardi: Geschichte und (...) europäische Identität bei Fichte Diogo Ferrer: Fichtes transzendentale Modelle der Geschichte Quentin Landenne: Die Bildungsgesellschaft als Integrationsdynamik der sozialen Perspektiven bei Fichte Cristiana Senigaglia: Freiheitsvollzug und Anerkennungsanspruch. Fichte, Charles Taylor und die heutige Fragestellung Individuelle Identität Christoph Asmuth: Die Unfreiheit einer Stahlfeder. Fichtes Sittenlehre von 1798 Christoph Binkelmann: Das Mehr in mir. Die Willkür in der Identitätsbildung nach Fichte Franziskus v. Heereman: »Als diese Ich sind wir alle Nichts«? Zur Person beim letzten Fichte Rocco Porcheddu: Praktisches Selbstbewusstsein und Autonomie bei Fichte, Frankfurt und Kant Rezensionen Tagungsbericht. (shrink)