Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and ...control to determine how and where their biospecimens and data should be used. We present Dwarna-a web portal for 'dynamic consent' that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners' consent in a blockchain to create an immutable audit trail of research partners' consent changes. Dwarna's structure also presents a solution to the European Union's General Data Protection Regulation's right to erasure-a right that is seemingly incompatible with the blockchain model. Dwarna's transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.
Despite the increasingly multinational nature of the workplace, there have been few studies of the convergence and divergence in beliefs about ethicsbased leadership across cultures. This study ...examines the meaning of ethical and unethical leadership held by managers in six societies with the goal of identifying areas of convergence and divergence across cultures. More specifically, qualitative research methods were used to identify the attributes and behaviors that managers from the People's Republic of China (the PRC), Hong Kong, the Republic of China (Taiwan), the United States (the U. S.), Ireland, and Germany attribute to ethical and unethical leaders. Across societies, six ethical leadership themes and six unethical leadership themes emerged from a thematic analysis of the open-ended responses. Dominant themes for ethical and unethical leadership for each society are identified and examined within the context of the core cultural values and practices of that society. Implications for theory, research, and management practice are discussed.
This paper introduces the key methodological challenges related to working with children within an ethnographic research design. After briefly identifying in-depth contextually rich data as the key ...aim of any ethnographic research, some of the particular challenges related to working with children are explored. These are described along two key axes: ethical issues related to power dynamics loaded in favour of the adult researcher, and practical, logistical barriers to generating data that are a true reflection of the young child's ideas and beliefs. ‘Process assent’ and ‘ethical symmetry’ are flagged as the key means of optimising ethicality, while the benefits of using the ‘least adult role’, and creative child centric activities are outlined as ways to generating and collecting trustworthy data.
Qualitative research with children as participants is challenging on many levels—ethical, methodological, and relational. When researching the experience of children with particular bodily ...vulnerabilities, these issues are further amplified. This article describes a data generating tool designed to address these challenges. It was used within the context of an ethnographic study exploring relational societal processes associated with childhood obesity in Malta. This creative child-centric method uses “me” drawings as elicitation foci during informal conversations in the field where the agentic status of the child was prioritized and their role as active collaborators emphasized. Optimizing ethical symmetry was a key concern, as was emphasis on relational ethics and assent. Using the “Draw(Me) and Tell” activity positioned the child in a realistic position of power by giving them control over the data generation process, and helped address ethical issues related to agency, privacy, and sensitivity. It allowed ethical generation of qualitative data based on the children’s reflexive commentary on their own body shapes, with the aim of exploring their embodied habitus, identity, and selfhood.
Childhood obesity is a major public health concern in contemporary Malta. This article applies a critical realist approach to exploring body shape in young children, recognising fatness and obesity ...to be both a biologically and a socially constructed phenomenon. The agentic status of the child is central to the research design aimed at exploring understandings of body shape and how they impact on relational dynamics in the lived experiences of young children in Malta. Ethnographic methods were used in a school setting, working with children (n = 134) in two age groups: 5 and 10‐year olds. The findings show a marked difference in the two groups. The obese 5‐year‐olds, buffered by robust protective strategies in their primary group, seem to be unaware of any difference in body shape. This situation changes in the older group where the fat body is stigmatised and obese children develop private coping strategies to deal with the physical disadvantages, taunting and exclusion by their peers. The data show that there is a culturally entrenched fluidity in the lay concept of obesity that impacts on the process of embodiment in young children and may have a lasting effect on body shape and weight.
Introduction: Risk governance is central for the successful and ethical operation of biobanks and the continued social license for being custodians of samples and data. Risks in biobanking are often ...framed as risks for participants, whereas the biobank’s risks are often considered as technical ones. Risk governance relies on identifying, assessing, mitigating and communicating all risks based on technical and standardized procedures. However, within such processes, biobank staff are often involved tangentially. In this study, the aim has been to conduct a risk mapping exercise bringing biobank staff as key actors into the process, making better sense of emerging structure of biobanks. Methods: Based on the qualitative research method of situational analysis as well as the card-based discussion and stakeholder engagement processes, risk mapping was conducted at the biobank setting as an interactive engagement exercise. The analyzed material comprises mainly of moderated group discussions. Results: The findings from the risk mapping activity are framed through an organismic metaphor: the biobank as a growing , living organism in a changing environment , where trust and sustainability are cross-cutting elements in making sense of the risks. Focusing on the situatedness of the dynamics within biobanking activity highlights the importance of prioritizing relations at the core of risk governance and promoting ethicality in the biobanking process by expanding the repertoire of considered risks. Conclusion: With the organismic metaphor, the research brings the diverse group of biobank staff to the central stage for risk governance, highlighting how accounting for such diversity and interdependencies at the biobank setting is a prerequisite for an adaptive risk governance.
This qualitative study examines the experiences of seven young children, aged eight to twelve, siblings of disabled children living in Malta. It aims at giving a voice to young siblings of disabled ...children and at identifying the need for services for these siblings. Participants in this study shared their experiences during individual interviews, and during a focus group discussion. The data were analysed in the light of the 'new sociology of childhood' and the 'social model of disability' using Thematic Analysis. Findings from this study show that siblings of disabled children share a unique relationship with their disabled siblings. Both positive and negative aspects of these experiences and their effect on the siblings emerged from this study. Different feelings towards their disabled siblings were shared. The siblings articulated their unique personal needs
Points of interest
This article recounts the personal experiences of young siblings of disabled children based on a study with seven Maltese children who have a disabled brother or sister.
Siblings shared their life experiences in relation to three main aspects: their life as children, their relationships with their disabled siblings, and their relationships with their family and friends.
Children mentioned that they would like to obtain information about their sibling's impairment so as to understand them better.
Siblings need to feel better prioritised when it comes to parental attention and support from family members.
Siblings may also benefit from services of organised peer support groups
Invertebrate communities in freshwater streams form the basis of many biomonitoring protocols that rely on coarse taxonomic resolution. Coarse resolution may group together species with different ...environmental preferences, masking the relationship between taxonomic composition and environmental variables. Alternatively, closely related species often share similar traits, and therefore, refining taxonomic resolution will not affect, or even may decrease, the strength of relationships between taxa and environment. To test these competing hypotheses, we characterized the metacommunity patterns of 5 orders (Coleoptera, Diptera, Ephemeroptera, Plecoptera, Trichoptera) and 1 subclass (Oligochaeta) of invertebrates in 21 streams in Algonquin Provincial Park, Ontario, Canada. We determined community composition at family, genus, and species (DNA barcode cluster) levels. For each taxonomic level within each order, we computed the amount of variation explained by 20 local environmental and spatial variables. We also compared site diversity rankings, based on richness, Shannon index, and Simpson index values, between species–genus, genus–family, and species–family levels of resolution. We found evidence to support our 2nd hypothesis. Also, reducing taxonomic resolution decreased the consistency of site rankings for all 3 diversity indices. These results suggest the ecological interchangeability of species within genera, or even within families, given the environmental variables we measured. Furthermore, these results emphasize the importance of carefully considering taxonomic resolution for metacommunity work as well as biomonitoring.
Evolutionary approaches are gaining popularity in conservation science, with diverse strategies applied in efforts to support adaptive population outcomes. Yet conservation strategies differ in the ...type of adaptive outcomes they promote as conservation goals. For instance, strategies based on genetic or demographic rescue implicitly target adaptive population states whereas strategies utilizing transgenerational plasticity or evolutionary rescue implicitly target adaptive processes. These two goals are somewhat polar: adaptive state strategies optimize current population fitness, which should reduce phenotypic and/or genetic variance, reducing adaptability in changing or uncertain environments; adaptive process strategies increase genetic variance, causing maladaptation in the short term, but increase adaptability over the long term. Maladaptation refers to suboptimal population fitness, adaptation refers to optimal population fitness, and (mal)adaptation refers to the continuum of fitness variation from maladaptation to adaptation. Here, we present a conceptual classification for conservation that implicitly considers (mal)adaptation in the short‐term and long‐term outcomes of conservation strategies. We describe cases of how (mal)adaptation is implicated in traditional conservation strategies, as well as strategies that have potential as a conservation tool but are relatively underutilized. We use a meta‐analysis of a small number of available studies to evaluate whether the different conservation strategies employed are better suited toward increasing population fitness across multiple generations. We found weakly increasing adaptation over time for transgenerational plasticity, genetic rescue, and evolutionary rescue. Demographic rescue was generally maladaptive, both immediately after conservation intervention and after several generations. Interspecific hybridization was adaptive only in the F1 generation, but then rapidly leads to maladaptation. Management decisions that are made to support the process of adaptation must adequately account for (mal)adaptation as a potential outcome and even as a tool to bolster adaptive capacity to changing conditions.
Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in ...management or scientific roles in research-based biobanks, who have an important impact on shaping these transformations. In particular, it highlights that recent advances in molecular medicine and genomic research have raised a range of ethical, legal and societal implications (ELSI) related to biobank-based research, impacting directly on regulations and local practices of informed consent (IC), private-public partnerships (PPPs), and engagement of participants. In our study, we investigate the ways that these concerns influence biobanking practices and assess the level of satisfaction of the cross-national biobanking research communities with the ELSI related procedures that are currently in place. We conducted an online survey among biobankers and researchers to investigate secondary use of data, informing and/or re-contacting participants, sharing of data with third parties from industry, participant engagement, and collaboration with industrial partners. Findings highlight the need for a more inclusive and transparent biobanking practice where biobanks are seen in a more active role in providing information and communicating with participants; the need to improve the current IC procedures and the role of biobanks in sharing of samples and data with industry partners and different countries, and the need for practical, tangible and hands-on ethical and legal guidance.
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