Publics and biobanks: Pan-European diversity and the challenge of responsible innovation.
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ABSTRACT:
SUBMITTER: Gaskell G
PROVIDER: S-EPMC3522201 | biostudies-literature | 2013 Jan
REPOSITORIES: biostudies-literature
Publications
Publics and biobanks: Pan-European diversity and the challenge of responsible innovation.
Gaskell George G Gottweis Herbert H Starkbaum Johannes J Gerber Monica M MM Broerse Jacqueline J Gottweis Ursula U Hobbs Abbi A Helén Ilpo I Paschou Maria M Snell Karoliina K Soulier Alexandra A
European journal of human genetics : EJHG 20120606 1
This article examines public perceptions of biobanks in Europe using a multi-method approach combining quantitative and qualitative data. It is shown that public support for biobanks in Europe is variable and dependent on a range of interconnected factors: people's engagement with biobanks; concerns about privacy and data security, and trust in the socio-political system, key actors and institutions involved in biobanks. We argue that the biobank community needs to acknowledge the impact of thes ...[more]
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Project description:Highlights • The OIS concept can be used to analyse multi-actor co-innovation partnerships.• Co-innovation partnerships in agriculture and forestry occur in many forms.• Often based on existing networks, they mobilise complementary forms of knowledge.• ‘Outreach’ practices to foster dialogue with a ‘larger periphery’ are commonly used.• The ‘enabling environment’ affects the performance of the co-innovation partnership. Innovation rests not only on discovery but also on cooperation and interactive learning. In agriculture, forestry and related sectors, multi-actor partnerships for ‘co-innovation’ occur in many forms, from international projects to informal ‘actor configurations’. Common attributes are that they include actors with ‘complementary forms of knowledge’ who collaborate in an innovation process, engage with a ‘larger periphery’ of stakeholders in the Agricultural Knowledge and Innovation System (AKIS) and are shaped by institutions. Using desk research and interviews, we reviewed, according to the Organisational Innovation Systems framework, the performance of 200 co-innovation partnerships from across Europe, selected for their involvement of various actors ‘all along the process’. Many of the reviewed partnerships were composed of actors that had previously worked together and most interviewees believed that no relevant actors had been excluded. In almost all cases, project targets and objectives were co-designed to a great or some extent, and the mechanisms applied to foster knowledge sharing between partners were considered to be very effective. Great importance was attached to communication beyond the partnership, not simply for dissemination but also for dialogue, and most interviewees evaluated the communication/outreach performance of their partnership very highly. Most partnerships received external funding, most did not use innovation brokers during the proposal writing process and two thirds had access to information they needed. We discuss the implications of these findings and question whether the AKIS concept as currently interpreted by many policy makers can adequately account for the regional differences encountered by co-innovation partnerships across Europe.
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Project description:Biobanks are an important compound of personalized medicine and strongly support the scientific progress in stratification of population and biomarker discovery and validation due to progress in personalized medicine. Biobanks are an essential tool for new drug discoveries and drug development. Biobanks play an important role in the whole process of patient prevention and prediction, follow-up, and therapy monitoring and optimalization. Biobanks have the specificity in that they cover multidisciplinary approach to the human health combining biological and medical approaches, as well as informative bioinformatics technologies, computationing, and modeling. The importance of biobanks has during the last decade increased in variety and capacity from small collections of samples to large-scale national or international repositories. Collected samples are population-based, disease-specific or rare diseases originating from a diverse profile of individuals. There are various purposes of biobanks, such as diagnostics, pharmacology, or research. Biobanks involve, store, and operate with specific personal information, and as a consequence, such a diversity of biobanking is associated with a broad spectrum of ethical and legal issues. Biobanks are an international phenomenon because any single country, state, or society at the moment is not able to cover all issues involving the whole biobank problematic. Biobanks have an enormous innovative potential in the whole process of biomedical research in the twenty-first century.
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Project description:BackgroundResponsible innovation in health (RIH) emphasizes the importance of developing technologies that are responsive to system-level challenges and support equitable and sustainable healthcare. To help decision-makers identify whether an innovation fulfills RIH requirements, we developed and validated an evidence-informed assessment tool comprised of 4 inclusion and exclusion criteria, 9 assessment attributes and a scoring system.MethodsWe conducted an inter-rater reliability assessment to establish the extent to which 2 raters agree when applying the RIH Tool to a diversified sample of health innovations (n=25). Following the Tool's 3-step process, sources of information were collected and cross-checked to ensure their clarity and relevance. Ratings were reported independently in a spreadsheet to generate the study's database. To measure inter-rater reliability, we used: a non-adjusted index (percent agreement), a chance-adjusted index (Gwet's AC) and the Pearson's correlation coefficient. Results of the Tool's application to the whole sample of innovations are summarized through descriptive statistics.ResultsOur findings show complete agreement for the screening criteria, "almost perfect" agreement for 7 assessment attributes, "substantial" agreement for 2 attributes and "almost perfect" agreement for the RIH overall score. A large portion of the sample obtained high scores for 6 attributes (health relevance, health inequalities, responsiveness, level and intensity of care and frugality) and low scores for 3 attributes (ethical, legal, and social issues [ELSIs], inclusiveness and eco-responsibility). At the rating step, 88% of the innovations had a sufficient number of attributes documented (≥ 7/9), but the assessment was based on sources of moderate to high quality (mean score ≥ 2 points) for 36% of the sample. While "Almost all RIH features" were present for 24% of the innovations (RIH mean score between 4.1-5.0 points), "Many RIH features" were present for 52% of the sample (3.1-4.0 points) and "Few RIH features" were present for 24% of the innovations (2.1-3.0 points).ConclusionBy confirming key aspects of the RIH Tool's reliability and applicability, our study brings its development to completion. It can be jointly put into action by innovation stakeholders who want to foster innovations with greater social, economic and environmental value.
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