Objectives: The purpose of this systematic review was to examine how the scientific community in Europe that is involved with research with animals perceives and experiences the implementation of 3R (Replace, Reduce, Refine).
Methods: A systematic search of the literature published in the past ten years was performed in PubMed, Web of Science and Scopus. Publications were screened for eligibility using a priori inclusion criteria, and only empirical evidence (quantitative, qualitative, or mixed methodologies) was retained.
Introduction: Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands at an important crossroad, debating the right way forward.
View Article and Find Full Text PDFInclusion and diversity in precision oncology are essential in reducing cancer disparities among racial and ethnic groups. However, present studies have favored the recruitment and participation of Whites, with limited applicability of their results to minority groups. Many reasons for their underrepresentation are downstream manifestations of structural racism.
View Article and Find Full Text PDFThe COVID-19 pandemic has revealed deeply entrenched structural inequalities that resulted in an excess of mortality and morbidity in certain racial and ethnic groups in the United States. Therefore, this paper examines from the US perspective how structural racism and defective data collection on racial and ethnic minorities can negatively influence the development of precision public health (PPH) approaches to tackle the ongoing COVID-19 pandemic. Importantly, the effects of structural and data racism on the development of fair and inclusive data-driven components of PPH interventions are discussed, such as with the use of machine learning algorithms to predict public health risks.
View Article and Find Full Text PDFBackground: The meaningful sharing of health data between different stakeholders is central to the advancement of science and to improve care offered to individual patients. However, it is important that the interests of individual stakeholders involved in this data sharing ecosystem are taken into account to ensure fair data sharing practices. In this regard, this qualitative study investigates such practices from the perspectives of a subset of relevant Swiss expert stakeholders, using a distributive justice lens.
View Article and Find Full Text PDFFacilitating access to health data for public health and research purposes is an important element in the health policy agenda of many countries. Improvements in this sense can only be achieved with the development of an appropriate data infrastructure and the implementations of policies that also respect societal preferences. Switzerland is a revealing example of a country that has been struggling to achieve this aim.
View Article and Find Full Text PDFHealth research is gradually embracing a more collectivist approach, fueled by a new movement of open science, data sharing and collaborative partnerships. However, the existence of systemic contradictions hinders the sharing of health data and such collectivist endeavor. Therefore, this qualitative study explores these systemic barriers to a fair sharing of health data from the perspectives of Swiss stakeholders.
View Article and Find Full Text PDFBackground: Precision medicine (PM) is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the most suitable treatment by promoting the sharing of health data and the implementation of learning healthcare systems. Alongside its promises, PM also entails the risk of exacerbating healthcare inequalities, in particular between ethnoracial groups.
View Article and Find Full Text PDFAs accessing, collecting, and storing personal information become increasingly easier, the secondary use of data has the potential to make healthcare research more cost and time effective. The widespread reuse of data, however, raises important ethical and policy issues, especially because of the sensitive nature of genetic and health-related information. Regulation is thus crucial to determine the conditions upon which data can be reused.
View Article and Find Full Text PDFBackground: Digital Pills (DP) are an innovative drug-device technology that permits to combine traditional medications with a monitoring system that automatically records data about medication adherence as well as patients' physiological data. Although DP are a promising innovation in the field of digital medicine, their use has also raised a number of ethical concerns. These ethical concerns, however, have been expressed principally from a theoretical perspective, whereas an ethical analysis with a more empirically oriented approach is lacking.
View Article and Find Full Text PDFIntroduction: The digitalization of medicine has led to a considerable growth of heterogeneous health datasets, which could improve healthcare research if integrated into the clinical life cycle. This process requires, amongst other things, the harmonization of these datasets, which is a prerequisite to improve their quality, re-usability and interoperability. However, there is a wide range of factors that either hinder or favor the harmonized collection, sharing and linkage of health data.
View Article and Find Full Text PDFAdvances in information technology are changing public health at an unprecedented rate. Participatory surveillance systems are contributing to public health by actively engaging digital (eg, Web-based) communities of volunteer citizens to report symptoms and other pertinent information on public health threats and also by empowering individuals to promptly respond to them. However, this digital model raises ethical issues on top of those inherent in traditional forms of public health surveillance.
View Article and Find Full Text PDFJMIR Public Health Surveill
October 2018
Background: Influenzanet was launched in several European countries to monitor influenza-like illness during flu seasons with the help of volunteering participants and Web-based technologies. As in the case of developing fields, ethical approaches are not well developed in the collection, processing, and analysis of participants' information. Existing controversies and varying national ethical regulations can, thus, hamper efficient cross-border research collaboration to the detriment of quality disease surveillance.
View Article and Find Full Text PDFSince the 9/11 terrorist attacks, there has been an increase in public discussion regarding U.S. domestic intelligence activities.
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