49 research outputs found

    Bridging consent: from toll bridges to lift bridges?

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    <p>Abstract</p> <p>Background</p> <p>The ability to share human biological samples, associated data and results across disease-specific and population-based human research biobanks is becoming increasingly important for research into disease development and translation. Although informed consent often does not anticipate such cross-domain sharing, it is important to examine its plausibility. The purpose of this study was to explore the feasibility of bridging consent between disease-specific and population-based research. Comparative analyses of 1) current ethical and legal frameworks governing consent and 2) informed consent models found in disease-specific and population-based research were conducted.</p> <p>Discussion</p> <p>Ethical and legal frameworks governing consent dissuade cross-domain data sharing. Paradoxically, analysis of consent models for disease-specific and population-based research reveals such a high degree of similarity that bridging consent could be possible if additional information regarding bridging was incorporated into consent forms. We submit that bridging of consent could be supported if current trends endorsing a new interpretation of consent are adopted. To illustrate this we sketch potential bridging consent scenarios.</p> <p>Summary</p> <p>A bridging consent, respectful of the spirit of initial consent, is feasible and would require only small changes to the content of consents currently being used. Under a bridging consent approach, the initial data and samples collection can serve an identified research project as well as contribute to the creation of a resource for a range of other projects.</p

    Accessing parental perspectives to inform the development of parent training in autism in south-eastern Europe

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    Parent training has been shown to be an important means of supporting families living with autism – but such services are not universally accessible. A multinational project funded by the European Commission has been developed in order to establish such parent training in three south-eastern European countries. To ensure that the training was relevant and appropriate, a survey was carried out in autumn 2015 to ascertain the attitudes of parents of children with autism in Croatia, Cyprus and the Former Yugoslav Republic of Macedonia regarding this issue, and to identify the areas of training that they felt most important. Two hundred and fifty-three surveys were distributed, and 148 were returned, a response rate of 58%. Respondents in the three counties were overwhelmingly positive about parent training, with almost 90% stating that they would like to attend such training. Weekend training sessions were preferred by the majority of respondents. There was wide variation between the three countries with regard to what content was felt important to be included, with parents in the FYR of Macedonia seeking information in the greatest number of areas. Five topics were prioritised by parents across all three countries. These were: • Strategies for enhancing my child’s communication • Strategies on facilitating my child’s interaction with other children • Sensory integration and development • General information on behavioural management strategies • Identifying and/or developing socialisation opportunitie

    Some thoughts on higher education

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    Meeting: Seminar on Education, Employment and Equity, 6 Mar. 1975, Jakarta, I
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