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1.
Sociol Health Illn ; 37(2): 212-26, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25683125

RESUMO

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.


Assuntos
Imagem Corporal/psicologia , Obesidade Infantil/psicologia , Autoimagem , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Malta , Relações Mãe-Filho/psicologia , Mães/psicologia
2.
Front Genet ; 15: 1397156, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38948356

RESUMO

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.

3.
Eur J Hum Genet ; 28(5): 609-626, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-31844175

RESUMO

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.


Assuntos
Bancos de Espécimes Biológicos/normas , Blockchain , Privacidade Genética/normas , Genética Médica/normas , Consentimento Livre e Esclarecido/normas , Humanos , Software , Participação dos Interessados
4.
Early Hum Dev ; 133: 72-75, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30981599

RESUMO

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.


Assuntos
Antropologia Cultural/ética , Consentimento Informado por Menores/ética , Escrita Médica/normas , Pesquisa Qualitativa , Bioética , Consentimento Informado por Menores/normas
5.
Biopreserv Biobank ; 16(2): 97-105, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29359962

RESUMO

The known challenge of underutilization of data and biological material from biorepositories as potential resources for medical research has been the focus of discussion for over a decade. Recently developed guidelines for improved data availability and reusability-entitled FAIR Principles (Findability, Accessibility, Interoperability, and Reusability)-are likely to address only parts of the problem. In this article, we argue that biological material and data should be viewed as a unified resource. This approach would facilitate access to complete provenance information, which is a prerequisite for reproducibility and meaningful integration of the data. A unified view also allows for optimization of long-term storage strategies, as demonstrated in the case of biobanks. We propose an extension of the FAIR Principles to include the following additional components: (1) quality aspects related to research reproducibility and meaningful reuse of the data, (2) incentives to stimulate effective enrichment of data sets and biological material collections and its reuse on all levels, and (3) privacy-respecting approaches for working with the human material and data. These FAIR-Health principles should then be applied to both the biological material and data. We also propose the development of common guidelines for cloud architectures, due to the unprecedented growth of volume and breadth of medical data generation, as well as the associated need to process the data efficiently.


Assuntos
Bancos de Espécimes Biológicos , Confidencialidade/normas , Bases de Dados Factuais/normas , Disseminação de Informação/métodos , Bancos de Espécimes Biológicos/organização & administração , Bancos de Espécimes Biológicos/normas , Guias como Assunto , Humanos
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