Expectations are high for digital technologies to address sustainability related challenges. While research into such applications and the twin transformation is growing rapidly, insights in the actual daily practices of digital sustainability within organizations is lacking. This is problematic as the contributions of digital tools to sustainability goals gain shape in organizational practices. To bridge this gap, we develop a theoretical perspective on digital sustainability practices based on practice theory, with an emphasis on the concept of sociomateriality. We argue that connecting meanings related to sustainability with digital technologies is essential to establish beneficial practices. Next, we contend that the meaning of sustainability is contextspecific, which calls for a local meaning making process. Based on our theoretical exploration we develop an empirical research agenda.
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In this chapter it is argued that self-direction is currently well above the head of the majority of youngsters and even of many adults. Evidence for this conclusion stems from developmental and brain research. However, for various reasons it is important that people develop the competences that are necessary for self-direction. To what degree is it possible to develop these competences? Are they 'learnable'? What can education contribute?
Huntington’s disease (HD) and various spinocerebellar ataxias (SCA) are autosomal dominantly inherited neurodegenerative disorders caused by a CAG repeat expansion in the disease-related gene1. The impact of HD and SCA on families and individuals is enormous and far reaching, as patients typically display first symptoms during midlife. HD is characterized by unwanted choreatic movements, behavioral and psychiatric disturbances and dementia. SCAs are mainly characterized by ataxia but also other symptoms including cognitive deficits, similarly affecting quality of life and leading to disability. These problems worsen as the disease progresses and affected individuals are no longer able to work, drive, or care for themselves. It places an enormous burden on their family and caregivers, and patients will require intensive nursing home care when disease progresses, and lifespan is reduced. Although the clinical and pathological phenotypes are distinct for each CAG repeat expansion disorder, it is thought that similar molecular mechanisms underlie the effect of expanded CAG repeats in different genes. The predicted Age of Onset (AO) for both HD, SCA1 and SCA3 (and 5 other CAG-repeat diseases) is based on the polyQ expansion, but the CAG/polyQ determines the AO only for 50% (see figure below). A large variety on AO is observed, especially for the most common range between 40 and 50 repeats11,12. Large differences in onset, especially in the range 40-50 CAGs not only imply that current individual predictions for AO are imprecise (affecting important life decisions that patients need to make and also hampering assessment of potential onset-delaying intervention) but also do offer optimism that (patient-related) factors exist that can delay the onset of disease.To address both items, we need to generate a better model, based on patient-derived cells that generates parameters that not only mirror the CAG-repeat length dependency of these diseases, but that also better predicts inter-patient variations in disease susceptibility and effectiveness of interventions. Hereto, we will use a staggered project design as explained in 5.1, in which we first will determine which cellular and molecular determinants (referred to as landscapes) in isogenic iPSC models are associated with increased CAG repeat lengths using deep-learning algorithms (DLA) (WP1). Hereto, we will use a well characterized control cell line in which we modify the CAG repeat length in the endogenous ataxin-1, Ataxin-3 and Huntingtin gene from wildtype Q repeats to intermediate to adult onset and juvenile polyQ repeats. We will next expand the model with cells from the 3 (SCA1, SCA3, and HD) existing and new cohorts of early-onset, adult-onset and late-onset/intermediate repeat patients for which, besides accurate AO information, also clinical parameters (MRI scans, liquor markers etc) will be (made) available. This will be used for validation and to fine-tune the molecular landscapes (again using DLA) towards the best prediction of individual patient related clinical markers and AO (WP3). The same models and (most relevant) landscapes will also be used for evaluations of novel mutant protein lowering strategies as will emerge from WP4.This overall development process of landscape prediction is an iterative process that involves (a) data processing (WP5) (b) unsupervised data exploration and dimensionality reduction to find patterns in data and create “labels” for similarity and (c) development of data supervised Deep Learning (DL) models for landscape prediction based on the labels from previous step. Each iteration starts with data that is generated and deployed according to FAIR principles, and the developed deep learning system will be instrumental to connect these WPs. Insights in algorithm sensitivity from the predictive models will form the basis for discussion with field experts on the distinction and phenotypic consequences. While full development of accurate diagnostics might go beyond the timespan of the 5 year project, ideally our final landscapes can be used for new genetic counselling: when somebody is positive for the gene, can we use his/her cells, feed it into the generated cell-based model and better predict the AO and severity? While this will answer questions from clinicians and patient communities, it will also generate new ones, which is why we will study the ethical implications of such improved diagnostics in advance (WP6).
SOCIO-BEE proposes that community engagement and social innovation combined with Citizen Science (CS) through emerging technologies and playful interaction can bridge the gap between the capacity of communities to adopt more sustainable behaviours aligned with environmental policy objectives and between the citizen intentions and the real behaviour to act in favour of the environment (in this project, to reduce air pollution). Furthermore, community engagement can raise other citizens’ awareness of climate change and their own responses to it, through experimentation, better monitoring, and observation of the environment. This idea is emphasised in this project through the metaphor of bees’ behaviour (with queens, working and drone bees as main CS actors), interested stakeholders that aim at learning from results of CS evidence-based research (honey bears) and the Citizen Science hives as incubators of CS ideas and projects that will be tested in three different pilot sites (Ancona, Marousi and Ancona) and with different population: elderly people, everyday commuters and young adults, respectively. The SOCIO-BEE project ambitions the scalable activation of changes in citizens’ behaviour in support of pro-environment action groups, local sponsors, voluntary sector and policies in cities. This process will be carried out through low-cost technological innovations (CS enablers within the SOCIO BEE platform), together with the creation of proper instruments for institutions (Whitebook and toolkits with recommendations) that will contribute to the replication, upscaling, massive adoption and to the duration of the SOCIO-BEE project. The solution sustainability and maximum outreach will be ensured by proposing a set of public-private partnerships.For more information see the EU-website.
