Research about science and publics in the COVID-19 pandemic often focuses on public trust and on identifying and correcting public attitudes. Drawing on qualitative interviews with 209 residents in six countries-Austria, Bolivia, Germany, Italy, Mexico, and Portugal-this article uses the concept of performativity to explore how participants understand, and relate to science, in the COVID-19 context. By performa...
Objectives: The aim of this study was to explore concerns and coping mechanisms during the first national COVID-19 lockdown in Portugal. The general population provided statements via an open comment box as part of an online prospective study. Study design: This was an Internet-based open cohort study. Methods: Individuals aged ≥16 years were eligible to participate in this study. Inductive content analysis was...
Assessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare professionals in Northern Portugal about the benefits and risks of sharing genomic data for research, and its associ...
Introduction International policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. Engaging with local stakeholders and understanding how their needs, values and preferences for governing health data...
Background: The urgent need for mechanical ventilators to support respiratory insufficiency due to SARS-CoV-2 led to a worldwide effort to develop low-cost, easily assembled, and locally manufactured ventilators. The ATENA ventilator project was developed in a community-based approach targeting the development, prototyping, testing, and decentralized manufacturing of a new mechanical ventilator. Objective: This...
Purpose: Regulation of payment to gamete donors varies substantially across countries. The development of an ethically sustainable governance system of payments in gamete donation demands that the preferences of different stakeholders be heard. This study intends to contribute to improving the understanding of payment to gamete donors by analysing the views of donors and recipients about the preferred form of p...
Genetic diversity of Mycobacterium tuberculosis affects immune responses and clinical outcomes of tuberculosis (TB). However, how bacterial diversity orchestrates immune responses to direct distinct TB severities is unknown. Here we study 681 patients with pulmonary TB and show that M. tuberculosis isolates from cases with mild disease consistently induce robust cytokine responses in macrophages across multiple...
Genetic diversity of Mycobacterium tuberculosis affects immune responses and clinical outcomes of tuberculosis (TB). However, how bacterial diversity orchestrates immune responses to direct distinct TB severities is unknown. Here we study 681 patients with pulmonary TB and show that M. tuberculosis isolates from cases with mild disease consistently induce robust cytokine responses in macrophages across multiple...
Conhecer a discussão em torno dos desafios sociais e éticos da doação de gametas é fundamental para a boa governança das técnicas de reprodução assistida. Neste artigo, analisam-se os tópicos que orientaram o debate nas organizações de ética portuguesas, discutindo as suas conexões com os temas abordados internacionalmente. Para tal, em março de 2018, pesquisamos sistematicamente os websites do Conselho Naciona...
Background Forensic DNA testing is a powerful tool used to identify, convict, and exonerate individuals charged of criminal offenses, but there are different views on its benefits and risks. Knowledge about public views on forensic DNA testing applied in the criminal field is socially valuable to practitioners and policymakers. This paper aims to synthesize quantitative evidence about the factors that influence...