What is this about? (Is About)
From The Embassy of Good Science
A short summary providing some details about the theme/resource (max. 75 words)
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This topic is about the ethical principles for involving children in research. Because children often cannot make fully informed decisions on their own, parents or caregivers provide informed consent.Proper informed consent protect children, respect their autonomy, providing a framework for responsible and ethical research. +
An individual can be identified directly (e.g. by name, address, telephone number, photograph) or indirectly (e.g. by place of work, particular condition). Anonymisation and pseudonymisation remove or minimize the risk of re-identification of individuals by masking the data. When data is anonymised the individuals are no longer identifiable, while in pseudonymised data there is a residual risk of re-identification. +
Data management plans (DMPs) are formal documents in which researchers describe how they plan to use data during and after the research.'"`UNIQ--ref-00000000-QINU`"' This helps researchers in sharing their data according to the FAIR principles (findable, accessible, interoperable, and re-useable), as recommended by the European Code of Conduct (ECoC).'"`UNIQ--ref-00000001-QINU`"''"`UNIQ--ref-00000002-QINU`"'
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The FAIR principles describe the ideal way data should be stored and shared to maximise its usefulness and allow the whole research community to benefit from it. FAIR stands for “Findable, Accessible, Interoperable and Re-usable”. The main goal of the FAIR principles is to enable the "‘long term care' of valuable digital assets"'"`UNIQ--ref-00000000-QINU`"', in order to allow them to be reused for future research. The scope of these principles goes beyond the data in the conventional sense but includes all the components of the research process, including the algorithms and workflows that lead to the resulting data. This means that FAIR data management supports both human-driven and machine-driven data discovery and exploitation activities.
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Genome-wide association studies (GWAS) test the association between genomic variants and diseases or quantitative traits. In order to perform such analyses, researches are genotyping a large number of genomic variants for a large number of individuals. The information from a GWA scan is derived from DNA, which is a powerful personal identifier and can provide information not just on the individual, but also on the individual’s relatives, related groups and populations. +
Selecting a digital data repository for sharing and preserving research data is an important task because different repositories are suited for different kinds of data. Since it is not always easy to choose the right repository, researchers should use tools such as guides and checklists that can help them in this process. +
Missing data is always a limitation in the interpretation of clinical trial results. This missing data may seriously affect the inference from clinical trials. Therefore, it is necessary to establish the criteria to handle missing data prior to the clinical trial. Imputation is a potential tool to overcome the bias from missing data but it must be carefully used. +
Research data availability is a growing burden due to the emerging number of studies, analytical improvements and unsatisfactory utilization of repository systems. One of the fast-growing initiatives that aim to increase data accessibility to the readers and other researchers is the ''open data movement''. An increasing number of repositories allows routine and open publication of raw datasets along with the manuscript (eg. ''Open Science Framework – OSF''), or alternatively upon reasonable request to the corresponding author. +
Data repositories are “large database infrastructures” that collect, manage, and store data sets. They are also known as data libraries or data archives.'"`UNIQ--ref-00000000-QINU`"' Depositing data into digital repositories is beneficial for all stakeholders in research as researchers share them, make them visible, safe, preserved, and ready for future use.
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Artificial intelligence (AI) is revolutionizing research, from automating data analysis to generating content. However, its use raises critical ethical questions: Are AI tools being applied responsibly? When integrating AI into research, how do we ensure transparency, accountability, and fairness? This thematic page explores the ethical challenges of using AI in research and provides insights into how researchers can navigate this rapidly evolving landscape with integrity. +
Paper mills are companies that produce and sell scientific manuscripts. These manuscripts are usually of poor quality, relying on fraudulent data or plagiarised research.'"`UNIQ--ref-00000000-QINU`"' Paper mills thrive on the “publish or perish” imperative, allowing scientific researchers to quickly publish articles that resemble genuine research in scientific journals, and artificially inflating their research profiles.'"`UNIQ--ref-00000001-QINU`"' Paper mills cause serious harm by casting doubt on the trustworthiness of scientific research, and have led to calls for a reassessment of the mechanisms of scientific publication.
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When a grant proposal is reviewed, the reviewers can have a confict of interest (COI). COIs should be declared by external reviewers and employees of research funding organizations (RFOs). RFOs and/or host institutions applying for funding need to have a code in place stating what constitutes a COI, how to declare a COIs, and what steps need to be taken when there is a COI. +
Research funds can be derived from private as well as public sources. Industry, or commerical organisations, are important private funders. Collaborations between academia and industry can be beneficial by generating knowledge on topics of mutual interest, or developing technologies, products, services, etc. Industry funded research has however also been subject to heavy criticism;industry stakeholders are known to set research agendas in their favour, supress publications and sometimes present only the results which favour the funder. '"`UNIQ--ref-00000000-QINU`"''"`UNIQ--ref-00000001-QINU`"' Practices which have been reported in tobacco, pharmaceutical, chemical and food industry funded research. '"`UNIQ--ref-00000002-QINU`"' '"`UNIQ--ref-00000003-QINU`"' '"`UNIQ--ref-00000004-QINU`"' '"`UNIQ--ref-00000005-QINU`"' '"`UNIQ--ref-00000006-QINU`"'
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Healthcare industry funding plays a major role in continuing medical education (CME) for healthcare professionals. CME is necessary to ensure the maintenance or development of new skills in the era of rapid increase in the number of complex treatments and technologies. While industry support provides access to high-quality learning, it also raises ethical concerns about bias, influence, and the integrity of medical decision-making. +
When research produces new inventions and ideas, these can be protected in the form of intellectual property (IP) rights. “Intellectual property includes all exclusive rights to intellectual creations. It encompasses two types of rights: industrial property, which includes inventions (patents), trademarks, industrial designs and models and designations of origin, and copyright, which includes artistic and literary property”. '"`UNIQ--ref-00000000-QINU`"' Countries have their own legislation concering IP rights. Examples of IP rights are patents, copyright and trademarks.
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As funders are an important stakeholder in many research projects, they often monitor the research process. The funder can decide to monitor the project closely, to have standard protocols in place (e.g. for research misconduct or changing research methods), and to evaluate a project. Prior to the commencement of a project, there should be agreement between the research funding organization (RFO) and the research performing organization (RPO) on how the project will be monitored. +
In managing a research laboratory, a variety of ethical challenges occur, including issues with the management of personnel, financial and material resources, projects, and data. Many laboratory employees found an overall ethical issue in balancing the urge for efficiency against seemingly opposing ideals such as treating people fairly and supporting individual well-being. Many of them also stated that their graduate and post-graduate education and training did not adequately prepare them to deal with the ethical, financial, interpersonal, and other issues that arise when managing a research laboratory, and that effective communication and leadership are essential for ethical research laboratory management. '"`UNIQ--ref-00000000-QINU`"'
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More and more clinical trials are being conducted all over the world as technology is advancing at a very fast pace. Many of these trials include companies that are bound to have great profits if the trial pans out. Sponsorship of drug and device studies by the manufacturing companies often leads to more favorable efficacy results with an industry bias becoming a real problem. '"`UNIQ--ref-00000000-QINU`"'
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This page addresses the ethical framework surrounding '''informed consent''' and '''assent''' in research involving children. It explores the processes by which researchers obtain permission from parents or guardians (consent) and the agreement from children (assent) to participate in research studies. It emphasizes the importance of respecting children's rights, autonomy, and developmental capacity during these processes. +
This theme is about collecting informed consent in clinical, psychiatry research and the issues that follow this process. +
