The Dutch approach to genomics and society is taken as an example to show that the dream of achieving a symmetrical dialogue between social and bioscientists is not easily realized. Dutch social science and genomics experts aspired to create a bottom-up network for society and genomics that would enable social scientists to bring their own expertise and views into the dialogue with bioscientists. However, in the final stage of founding the network, this aspiration was nipped in the bud. As a result, the genomics and society research agenda has become primarily governed by the desire to adequately implement genomics in society.
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This essay focuses on the aspirations of young people, which we take to be a critical drive to their political and social commitments. As reflected in a wealth of social scientific research on educational and occupational aspirations of young people, the formulation of a desirable future is an important step in formal education and one’s preparation to enter the labour market. Yet, aspirations also matter in other spheres of social life. For example, young people may have aspirations that relate to the consumption of goods. The prospect of having a high purchasing power happens to impact school motivation. Additionally, active political participation may reflect the aspirations of some citizens with regards to a desirable future. Nowadays, aiming at achieving happiness is largely regarded as a universal, if not a basic right, applying to anyone, regardless of culture, ethnicity, social class, gender, age or sexual preference. However, young people obviously don’t all have the same aspirations. How do aspirations arise? What do we know about what shapes the aspirations of young Europeans? What makes young people capable of aspiration/what enables the aspiration of young people?
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What happens at the urban edge and the SURF aspiration to influence it? Projects in the urban fringe Urban fringe governance Integrated policy guidelines and approaches towards urban fringe planning and management The future management of the urban fringe
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Background: Infantile hereditary proximal spinal muscular atrophy (SMA) type 1 is characterized by onset in the first 6 months of life and severe and progressive muscle weakness. Dysphagia is a common complication but has not been studied in detail. Objective: To study feeding and swallowing problems in infants with SMA type 1, and to explore the relation between these problems and functional motor scores. Methods: We prospectively included 16 infants with SMA type 1 between September 2016 and October 2018. Eleven infants received palliative care and five infants best supportive care in combination with nusinersen. We compiled and used an observation list with feeding related issues and observed feeding sessions during inpatient and outpatient visits. The Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) was used as a measure of motor function. Results: All infants in the palliative care group (median onset of disease 14 days (range 1–56); median inclusion in the study 52 days (range 16–252) demonstrated symptoms of fatigue during feeding and unsafe swallowing. Symptoms were short nursing sessions (10–15 minutes), and not being able to finish the recommended feeding volumes (72%); increased frequency of feeding sessions (55%); coughing when drinking or eating (91%), and wet breathing during and after feeding (64%).Two out of five infants in the nusinersen group (median onset of disease 38 days (range 21–90); inclusion in the study at 63 days (range 3–218) were clinically pre-symptomatic at the start of treatment. The other three infants showed symptoms of fatigue and unsafe swallowing at inclusion in the study. These symptoms initially decreased after the start of the treatment, but (re)appeared in all five infants between the ages of 8 to 12 months, requiring the start tube of feeding. In the same period motor function scores significantly improved (median increase CHOP INTEND 16 points). Conclusion: Impaired feeding and swallowing remain important complications in infants with SMA type 1 after the start of nusinersen. Improvement of motor function does not imply similar gains in bulbar function.
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Loneliness and social isolation are increasingly recognized as important challenges of our times. Inspired by research hinting at beneficial effects of interacting with nature on social connectedness and opportunities provided by ambient technology to simulate nature in a rich and engaging manner, this study explored to what extent digital nature projections can stimulate social aspirations and related emotions. To this end, participants (N = 96) were asked to watch, individually or in pairs, digital nature projections consisting of animated scenes which were either dense or spacious and depicting either wild or tended nature. Subsequently, they filled out a questionnaire comprising measures for social aspirations, awe and fascination. Results show that spacious scenes elicited significantly higher social aspiration and awe scores, especially when watching alone. Design implications are discussed for making digital nature accessible for people with limited access to real nature.
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E-health in de mondzorg. Is eHealth de sleutel tot een effectieve bijdrage aan de mondzorg bij thuiswonende ouderen? NTvM, januari 2017 , nummer 1
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This article explores the integration of a co-mentoring scheme within the participatory music practice of Meaningful Music in Healthcare (MiMiC) in Dutch medical hospitals. Building upon prior research that revealed a shared aspiration among MiMiC musicians and nurses to enhance collaborative efforts, the study explores the role of interprofessional collaboration not only for the immediate impact of music on people in the hospital environment but also for nurturing the sustained growth of the professionals involved. This article explores the implications and outcomes of a co-mentoring scheme, which took place in the form of reflective conversations between participating musicians and nurses, and examine their form, the relationships they foster within the MiMiC practice, and their contribution to interprofessional collaboration in transdisciplinary arts and health practices.
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The research explores what the SDG Framework, on the basis of the two major SDG challenges -the complexity challenge and the silo challenge-, are demanding of HEIs in terms of SDG Governance, the formulation of its Third Mission, its internal alignment to integrate the SDG and equip the Research and Educational departments with the right SDG competences. The research uses the conceptual approach of Intended SDG Policies, Actual SDG Practice and SDG Perceptions. Recent and relatively young SDG literature is explored and it draws conclusions that there are assumptions on the feasibility of achieving them. Are SDGs aspirational or inspirational? And should the Framework be considered a temporarily binding guidance rather than a global enforcement mechanism to prevent depletion of our social and natural capital? Much SDG research stops at providing analytical frameworks and tools to grapple with the complexity of SDG’s synergies, tradeoffs and spill-over effects. Some literature and tools are available on SDG pathways of urgency and priority ranking but this contradicts the Transformational claims of the SDGs of being Integrative, Indivisible and Universal. A theoretical and practical gap is observed how the SDGs must be viewed in the global community of national policies. But also as a derivative : How can organisations, private and public, view and address the challenges of the SDG Framework?
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