Das Biobankgeheimnis : Schutz der Persönlichkeitsrechte in der biomedizinischen Forschung

Biobanken sind Sammlungen von Körpersubstanzen, die mit umfangreichen gesundheits- und lebensstilbezogenen sowie geneologischen Daten ihrer Spender verknüpft sind. Sie dienen der Erforschung weit verbreiteter Krankheiten. Diese sog. Volkskrankheiten sind multifaktoriell bedingte Krankheiten. Dies bedeutet, dass diese Krankheiten das Ergebnis eines komplizierten Zusammenspiels von umwelt- und verhaltensrelevanten Faktoren mit individuellen genetischen Prädispositionen sind. Forschungen im Bereich von Pharmakogenomik und Pharmakogenetik untersuchen den Einfluss von Genen und Genexpressionen auf die individuelle Wirksamkeit von Medikamenten sowie auf die Entstehung ungewollter Nebenwirkungen und könnten so den Weg zu einer individualisierten Medizin ebnen. Menschliches Material ist ein wichtiger Bestandteil dieser Forschungen und die Nachfrage nach Sammlungen, die Proben mit Daten verknüpfen, steigt. Einerseits sehen Mediziner in Biobanken eine Chance für die Weiterentwicklung der medizinischen Forschung und des Gesundheitswesens. Andererseits lösen Biobanken auch Ängste und Misstrauen aus. Insbesondere wird befürchtet, dass Proben und Daten unkontrolliert verwendet werden und sensible Bereiche des Persönlichkeitsrechts und der persönlichen Identität betroffen sind. Diese Gefahren und Befürchtungen sind nicht neu, sondern bestanden schon in der Vergangenheit bei jeglicher Form der Spende von Körpersubstanzen. Neu ist aber der Umfang an Informationen, der durch die Genanalyse entsteht und den Spender in ganz besonderer Weise betreffen kann. Bei der Speicherung und Nutzung der medizinischen und genetischen Daten ergibt sich somit ein Spannungsfeld insbesondere zwischen dem Recht der betroffenen Datenspender auf informationelle Selbstbestimmung und den Forschungsinteressen der Datennutzer. Im Kern dreht sich die ethisch-rechtliche Bewertung der Biobanken um die Frage, ob diese Forschung zusätzliche Regeln braucht, und falls ja, wie umfassend diese sein müssten. Im Zentrum dieser Diskussion stehen dabei v.a. ethische Fragen im Zusammenhang mit der informierten Einwilligung, dem Datenschutz, der Wiederverwendung von Proben und Daten, der Information der Spender über Forschungsergebnisse und der Nutzungsrechte an den Daten. Ziel dieser Arbeit ist es, vor dem Hintergrund des Verfassungsrechts, insbesondere dem Recht auf informationelle Selbstbestimmung, das Datenschutzrecht im Hinblick auf die Risiken zu untersuchen, die sich aus der Speicherung, Verarbeitung und Kommunikation von persönlichen genetischen Informationen beim Aufbau von Biobanken ergeben. Daraus ergibt sich die weitere Untersuchung, ob und unter welchen Voraussetzungen die sich entgegenstehenden Interessen und Rechte aus verfassungsrechtlichem Blickwinkel in Einklang zu bringen sind. Eine wesentliche Frage lautet, ob die bisherigen rechtlichen Rahmenbedingungen ausreichen, um den Schutz der gespeicherten höchstpersönlichen Daten und zugleich ihre angemessene Nutzung zu gewährleisten. Das Thema ist interdisziplinär im Schnittfeld von Datenschutz, Verfassungsrecht sowie Rechts- und Medizinethik angelegt. Aus dem Inhalt: Naturwissenschaftliche und empirische Grundlagen von Biobanken – Überblick über Biobankprojekte in Europa und im außereuropäischen Ausland – Rechtsgrundlagen für Biobanken - Recht auf informationelle Selbstbestimmung - Recht auf Nichtwissen - Forschungsfreiheit - Qualitätssicherung und Verfahren – informierte Einwilligung – globale Einwilligung - Datenschutzkonzepte - Forschungsgeheimnis –– Biobankgeheimnis - Biobankgesetz

ISEB (INSTITUTO SUPERIOR DE ESTUDOS BRASILEIROS): A DIMENSÃO PEDAGÓGICA DA AÇÃO IDEOLÓGICA DE UMA INSTITUIÇÃO CULTURAL DO PERÍODO DE 1955 A 1964

A década de 1950 foi marcada por inúmeras transformações, sociais, políticas e econômicas, decorrentes da industrialização em curso no Brasil. Alguns setores da sociedade, como as elites políticas e um grupo de intelectuais, sentiram a necessidade de pensar as políticas educacionais entendendo o processo educacional como dimensão essencial da realidade brasileira por meio de publicações de numerosos trabalhos. Assim, foi criado no dia 14 de julho de 1955, o ISEB (Instituto Superior de Estudos Brasileiros), ainda no governo Café Filho, mas iniciou suas atividades no mandato de Juscelino Kubitschek. Era um instituto ligado ao Ministério da Educação e Cultura (MEC), porém gozava de autonomia administrativa e seus integrantes possuíam liberdade de pesquisa. Tinha como objetivo ser um local de estudos e debates para discutir o desenvolvimento do Brasil. Eram reflexões voltadas para o âmbito das Ciências Sociais como: Economia, Filosofia, Sociologia, História e Política, e a partir delas, buscava-se instaurar o debate, dialogar com a sociedade mediante palestras em institutos importantes na época e ainda, conferências em São Paulo, patrocinadas pelo Centro da Federação das Indústrias (FIESP). Seus trabalhos principais foram: a publicação de livros, artigos, jornais e a realização de conferências, além de São Paulo, em outras cidades, como Brasília e Rio de Janeiro. Por ser constituído de intelectuais de diferentes vertentes ideológicas, emergiam muitos atritos de ideias, o que, consequentemente, provocou várias crises dentro do instituto. Alguns, como Hélio Jaguaribe, defendiam que a instauração de um processo de desenvolvimento teria como direção a burguesia industrial. Em face do exposto, esta pesquisa investigou o papel pedagógico do ISEB, por meio da análise de suas publicações e dos cursos por ele ministrados. A proposta se deu no sentido de compreender seus dois momentos: o primeiro, durante o governo de Juscelino Kubitschek, e o segundo, no governo de João Goulart, buscando qualificar ideológica e pedagogicamente cada um deles. O estudo evidenciou que o ISEB possuía uma dimensão pedagógica, a qual, apesar de não estar descrita em seu estatuto, encontrava-se implícita em suas publicações, cursos e palestras.

Use of thermal imaging in sports medicine research : a short report

The assessment of skin temperature (Tsk) in athletic therapy and sports medicine research is an extremely important physiological outcome measure.Various methodsof recording Tsk, including thermistors, thermocouples and thermocrons are currently being used for research purposes. These techniques are constrained by their wires limiting the freedom of the subject, slow response times, and/or sensors falling off. Furthermore, as these products typically are directly attached to the skin and cover the measurement site, their validity may be questionable.This manuscript addresses the use and potential benefits of using thermal imaging (TI) in sport medicine research.Non-contact infrared TI offers a quick, non-invasive, portable and athlete-friendly method of assessing Tsk. TI is a useful Tsk diagnostic tool that has potential to be an integral part of sport medicine research in the future. Furthermore, as the technique is non-contact it has several advantages over existing methods of recording skin temperature

Beyond the Academy: Applying Anthropological Research, A Case Study of Demonstrating Impact in the U.K. 2014 REF

The 2014 Research Excellence Framework sought for the first time to assess the impact that research was having beyond the boundaries of the university and the wider academic sphere. While the REF continued the approach of previous research assessment exercises in attempting to measure the overall quality of research and teaching within the higher-education sector, it also expected institutions to evidence how some of their research had had ‘an effect on, change or benefit to the economy, society, culture, public policy or services, health, the environment or quality of life, beyond academia’ (REF 2012: 48). This article provides a case study in how researchers in one U.K. anthropology department were able to demonstrate the impact of their work in the public sphere successfully as part of this major audit exercise.

Government in the sunshine : hearings before the Subcommittee on Reorganization, Research, and International Organizations ... Ninety-third Congress, second session, on S. 260, a bill to provide that meetings of government agencies and of congressional committees shall be open to the public.

Hearings held May 21-22, October 15, 1974

Reflections of Academics on the Ethics of University Military Research

The article examines the ways that university military research violates the tenets of academic freedom and communication. Interviews with academics are used to raise concerns about the extent to which military research conflicts with the academic mission. The author includes an examination of specific cases where professors and students have challenged the militarization of research on university campuses.

EU Copyright Law in Support of European Research & Education

In this brief an explanation is given why Exceptions in copyright legislation are of great importance to the free flow of knowledge, essential to education and research in the European Union. At present the Freedom of access to knowledge for EU citizens is trapped in a complex web of national laws and local licensing arrangements. The current EU copyright law does not enable the vision of either a "Europe of knowledge" in the Bologna Process or of a "unified" European Research Area to be realised. To address this Exceptions and limitations harmonised to fit best practice are required to allow content to move digitally across Member States in support of education, research and libraries. Support for open content licensing by the European Parliament will strengthen authors’ rights, meet the needs of researchers, teachers and learners, and enable the free flow of knowledge in support of the "fifth freedom".

Research productivity levels of Chinese TEFL academics

Since China’s Economic Reform and its Open Door Policy, China has entered a new era of education (Adamson, 2002; Hu, 2005a). English has gained status as a language for international relations (Graddol, 1997) and international trade (Qu, 2007). Hence, in 2001, China’s Ministry of Education (MOE) required universities to offer 5-10% of their course units in English, particularly in the fields of information technology, biotechnology, finance and law (Jen, 2001; MOE, 2001). However, “the upgrading of national English proficiency, then, is predicted largely on the professional competence of the teaching force” (Hu, 2005b, p. 655). For TEFL academics, one component of this competence is the capacity to conduct research (Day, 1991; Shu, 2002). Indeed, research productivity has become essential for university success, and academics’ employment and promotional prospects. This study aims to investigate 182 Chinese TEFL academics’ research outputs across three Chinese higher education institutions through the research question: What are the research productivity levels of Chinese TEFL academics? A survey instrument was devised to gather TEFL academics’ calculations of research productivity and, in particular, the quality and quantity of research outputs over a five-year period (2004-2008). Descriptive statistics through SPSS were used to analyse data across research output fields (e.g., journal articles, conference papers). Academic status varied (n=182; teaching assistants 23.6%, lecturers 47.3%, associate professors 22.5%, and professors 6.6%) as did years of teaching (1-5 years 27.4%, 6-10 years 24.7%, 11-15 18.1%, 16-20 years 13.7%, > 21 years 15.9%). Results (n=182, male=27%, females=73%) indicated 18% had not produced any research in the five-year period. Indeed, more than 70% had produced no research in all categories except non-core journal articles and provincial projects. An overwhelming majority of TEFL academics had zero productivity in 10 of the 12 categories. Nevertheless, there were highly-productive TEFL academics, who had produced five or more pieces of research across the 12 categories. In addition, there was not much difference between sole and co-authored research outputs, except non-core journal articles where sole authored work was 20% higher than co-authored work. China’s desire for international competitiveness in education will require measures that facilitate higher levels of research productivity. These measures must include professional development, support and mentoring programs, and employment of personnel who can guide these processes. Research performance is an outcome, hence there is a need to understand Chinese TEFL academics’ perceptions about research, and experiences that may hinder and facilitate higher research productivity.

Discrepancy between human resource research and practice : comparison of industrial/organisational psychologists and human resource practitioners' beliefs

There is a large and growing body of research to show that human resource (HR) practices affect individual performance, organisational productivity and organisational performance. Academic findings about effective HR practices, however, have not readily been adopted by practitioners. A variety of theoretical and practical explanations have been advanced about the research-practice gap. Research by Rynes, Colbert, and Brown (2002) suggested that the research-practice gap is due to a lack of knowledge, but the extent to which these findings apply to the Australian context is unknown. The sample consisted of 102 industrial/organisational (I/O) psychologists and 89 HR practitioners. The main aim of the present study was to replicate and extend the work of Rynes et al. by examining and comparing the knowledge of I/O psychologists and HR practitioners. It was found that overall I/O psychologists were better informed about HR research than HR practitioners; in particular, they were more knowledgeable about management practices and recruitment and selection. In both groups, of the five content areas examined (Management Practices; General Employment Practices; Training and Development; Recruitment and Selection; and Compensation and Benefits), the greatest gaps were in Recruitment and Selection.

Role of libraries in building research endeavours

The research landscape is changing rapidly, and as a consequence the roles of libraries and librarians in supporting and working with researchers is also changing. Some of the drivers behind the changes in research practices and culture include: new technologies, government funding and measurement of research impact, and the importance of open access to data. In Australia, librarians work with researchers to help them identify high quality resources, increase their publication rate and manage and promote access to their research. QUT Library has established a number of initiatives to support researchers, including: establishment of the QUT digital repository ‘ePrints’; purchase of electronic books and electronic journals; programmes of workshops for researchers ; redesign of Library space and, and the creation of new staffing positions. The creation of the QUT ePrints repository was a major new initiative for the QUT Library. ePrints is a web-accessible repository of research outputs created for QUT staff and postgraduate students. The ePrints information is harvested by Google, and anyone searching for a QUT staff member on Google can find their publications listed in ePrints. This keynote address will discuss the context for the role of libraries in building research endeavours, highlight some examples of strategies and resources to supporting researchers. It will conclude with an outline of some key online resources for researchers in education. This presentation should be relevant for both individual researchers interested in conducting and promoting their own research, and for staff and organisations focused on building their support for research.

Formative and reflective measurement and validation mismatch in survey research : an archival analysis of information systems success constructs 1985-2007

The generic IS-success constructs first identified by DeLone and McLean (1992) continue to be widely employed in research. Yet, recent work by Petter et al (2007) has cast doubt on the validity of many mainstream constructs employed in IS research over the past 3 decades; critiquing the almost universal conceptualization and validation of these constructs as reflective when in many studies the measures appear to have been implicitly operationalized as formative. Cited examples of proper specification of the Delone and McLean constructs are few, particularly in light of their extensive employment in IS research. This paper introduces a four-stage formative construct development framework: Conceive > Operationalize > Respond > Validate (CORV). Employing the CORV framework in an archival analysis of research published in top outlets 1985-2007, the paper explores the extent of possible problems with past IS research due to potential misspecification of the four application-related success dimensions: Individual-Impact, Organizational-Impact, System-Quality and Information-Quality. Results suggest major concerns where there is a mismatch of the Respond and Validate stages. A general dearth of attention to the Operationalize and Respond stages in methodological writings is also observed.

The genesis of science education research in Australasia

Although the sciences were being taught in Australian schools well before the Second World War, the only evidence of research studies of this teaching is to be found in the report, published by ACER in 1932 of Roy Stanhope’s survey of the teaching of chemistry in New South Wales and a standardized test he had developed. Roy Stanhope was a science teacher with a research masters degree in chemistry. He had won a scholarship to go to Stanford University for doctoral studies, but returned after one year when his scholarship was not extended. He went on to be a founder in 1943 of the Australian Science Teachers Association (ASTA), which honours this remarkable pioneer through its annual Stanhope Oration. In his retirement Stanhope undertook a comparative study of science