Text (Instruction Step Text)
From The Embassy of Good Science
Describe the actions the user should take to experience the material (including preparation and follow up if any). Write in an active way.
- ⧼SA Foundation Data Type⧽: Text
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Six different modules on responsible open science can be found [[Guide:E525ee0d-0d7e-4ba5-b19b-89e4a5029b2f|here]], on the Embassy of Good Science and [https://classroom.eneri.eu/node/82 ENERI] platforms. [https://zenodo.org/records/11671024 Open Science Learning Gate] developed by [https://community.embassy.science/c/nerq/105 NERQ] offers the possibility to align trainings with the principles of the research community. To enhance the quality of open science practices, the ‘Open Science Learning Gate’ seeks to unite the research community while aligning and standardizing both a) customized and b) high-quality OS training programs. +
Most of the resources available are made by recommendations and guidelines on the use of responsible AI. Published by the European Commission, the [https://research-and-innovation.ec.europa.eu/document/download/2b6cf7e5-36ac-41cb-aab5-0d32050143dc_en?filename=ec_rtd_ai-guidelines.pdf Living Guidelines on the Responsible Use of Generative AI in Research] provides recommendations for researchers, research institutions and funding organizations. [https://www.academicintegrity.eu/ ENAI] developed [https://www.academicintegrity.eu/wp/wp-content/uploads/2024/06/Using-GenAI-Tools-Practical-Guide-for-Students-Ver1-MAR2024.pdf a practical guide for students] (see also [https://www.academicintegrity.eu/wp/wp-content/uploads/2024/06/USING-GENAI-TOOLS_guide_for_students_ver2.pdf here]) on the use of generative AI. [https://ukrio.org/ UKRIO] provides a full list of resources on [https://ukrio.org/ukrio-resources/ai-in-research/#list the use of AI in research]. +
'''''Target audience:''' doctoral students and early career researches, senior researchers, and RE/RI experts''
The RID-SSISS training for academics aims to develop leadership competencies by combining senior academics’ extant knowledge base with RE/RI and new leadership competencies. In addition to the foundational level, and the advanced level, the RID-SSISS project developed a training for supervisors and leaders ([https://www.researchethicstraining.net/leadershiplevel leadership level]). +
'''''Target audience:''' doctoral students and early career researches, senior researchers, and RE/RI experts''
The RID-SSISS training for academics aims to develop leadership competencies by combining senior academics’ extant knowledge base with RE/RI and new leadership competencies. In addition to the foundational level, and the advanced level, the RID-SSISS project developed a training for supervisors and leaders ([https://www.researchethicstraining.net/leadershiplevel leadership level]). +
[[File:Hunter syndrome block letters.jpg|center|frameless|600x600px]]
Now that you know a little about the syndrome, imagine that you are the parent of a 12-month-old child who has been diagnosed with severe Hunter syndrome. Your child is being offered the chance to try a new experimental therapy for the disease, but the treatment is untested in humans.
Are you likely to agree to their participation? Please select a response and then check to see how others have responded.
==== Feedback ====
Decisions about whether or not to participate in studies that are testing novel interventions can be challenging for anyone. Why not just let others take the risk in an experimental trial and wait to see what the outcomes are? For the parents or guardians of young children who are unable to consent for themselves, the decision-making is much more complex. As you work through the rest of the module, see whether you change your mind about your response. +
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*Start explaining the topic in a short way. You can help yourself with a slide, but this is not necessary. An example of the content you can use as an introduction is below:
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''Gene editing is a transformative and evolving technology that has great potential for addressing problems in healthcare, agriculture, among other areas. However, it also raises critical ethical questions since it can have severe and long-term societal and environmental consequences. Since the CRISPR-Cas9 became a reality, many debates about human enhancement and justice issues regarding access to the technology have surrounded gene editing.''
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''This training session is designed to equip participants with the knowledge and tools to navigate the complex ethical issues that arise from gene editing. By exploring and discussing real cases, participants will develop a deeper understanding of the challenges and responsibilities associated with gene editing.''
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<u>Trainer Tip</u>: Use this moment to create a welcoming and open environment, emphasizing that the session wants to encourage ethical reflection in an open and safe space.
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To assess trainees' current knowledge of ethical issues in biobanking practices, have them create a mind map. This can be done individually, in pairs, or in larger subgroups.
'''Assignment''': Write ''biobanking'' and ''ethical issues'' in the middle of a piece of paper and spend 5 minutes writing down associated words that come to mind. Use keywords to label overarching concepts and draw connecting lines to illustrate relations.
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Discuss in plenary the content of the mind maps. You can initiate a conversation among participants by asking: ''What surprises you if you look at other mind maps? Does anything you see raise questions for you?''
<br /><u>Trainer tip</u>: Encourage trainees to add words to the mind map during the training session.
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From the tabs at the top of the [[Main Page|Embassy homepage]], click the "Community" tab.
Once there, click the "Initiatives" block to navigate to the Initiatives section of the Embassy.
[[File:Initiatives Section navigation.png|center|thumb|600x600px]]
Once you are at the Initiatives section, click on the "Add Initiative" button in the top right corner to create a new page for your initiative.
[[File:Add Initiative 2.png|center|thumb|600x600px]] +
Defining reproducibility and replicability, has been a challenge in the research community, as different interpretations and even contradicting definitions are often used. Defining these terms has proven to be challenging as their use and understanding differs between fields of research. However, the European funded iRise consortium developed a reproducibility glossary by critically reviewing existing scientific literature. The glossary provides working definitions for the use of terms reproducibility, replicability and replication, as well as related concepts.
'''References'''
Voelkl, B., Heyard, R., Fanelli, D., Wever, K., Held, L., Würbel, H., Zellers, S., & Maniadis, Z. (2024). Glossary of common terminology resulting from scoping reviews. https://osf.io/ewybt. +
From the tabs at the top of the [https://embassy.science/wiki-wiki/index.php/Main_Page Embassy homepage], click the "Resources" tab.
From here, click the "Add" button in the top right corner. This will open a drop-down menu from which you can select the type of resource you want to add.
[[File:Add_Resource.mov|600px]]
The next steps will take you through the different types of resource - what they are, what you need to include in your page to save them successfully, and where you should place your project outputs. +
The ideal theme page for the Embassy presents a research integrity and ethics topic in a clear, concise, and engaging manner. Here are some tips to help you craft content that aligns with our style:
#'''Select a Relevant Topic''': Choose a subject relevant to research integrity and ethics (and which hasn't already been covered). Make sure it fits within one of the main categories: [https://embassy.science/wiki-wiki/index.php/Principles_&_Aspirations Principles & Aspirations], [https://embassy.science/wiki-wiki/index.php/Good_Practices Good Practices], or [https://embassy.science/wiki-wiki/index.php/Misconduct_&_Misbehaviors Misconduct & Misbehaviors].
#'''Write a Concise Introduction''': Begin with a brief overview that outlines the topic and highlights its significance in the context of good scientific practices. The tone here should be accessible and inviting!
#'''Structure the Content Logically''': Fill out your theme page in an organised way using our default headings and subheadings to guide readers through the information. At a minimum, your theme page should include a title, some information about why your topic is important, and one target group listed in the "For whom is this important?" box!
#'''Link to Related Resources''': Add links to relevant guidelines, cases, educational materials, and other resources available on the Embassy. This provides interested readers with opportunities for deeper exploration and practical application, and allows users to make the most of what the Embassy has to offer!
#'''Use an Objective Tone''': Your theme page should try present information about your topic as factually and impartially as possible. You should avoid including personal opinions and support statements with credible sources wherever possible.
#'''Use Clear and Accessible Language''': Write in a straightforward manner, avoiding jargon and complex terminology as much as you can. The goal is to make the content understandable to a diverse audience, including those who may not have specialized knowledge - try to write in language that could be understood by teenagers, older relatives, and adults with minimal scientific knowledge alike!<div></div>
By following these tips, you can create informative and engaging theme pages that align with our mission to promote research integrity and ethics.
[[File:Quiz on wooden blocks.png|center|frameless|600x600px]]
We begin with some questions to start you thinking about where your knowledge comes from. Do you know the answers to these questions?
(Complete the quiz before reading on)
Easy? Maybe, but how did you know the answers?
These questions represent two different kinds of knowledge: '''a priori''' and '''a posteriori'''. To answer questions A. and C., one can employ reasoning, whereas the answers to questions B. and D. stem from observation and experience. +
Next, log in using your ORCiD!
As interactive content is made on a different section of the Embassy platform, '''please note that you will need to log in again''', even if you had already logged in to create otherresources. +
[[File:M2.png|center|frameless|600x600px]]
The most prominent case of social injustice in research, is that of the Tuskegee Syphilis Study, conducted by the United States Public Health Service between 1932 to 1972 in Tuskegee, Alabama. +
[[File:M1.png|center|frameless|600x600px]]
Some of the benefits of international collaborative research include that it: +
[[File:AI Img1.png|center|frameless|600x600px]]
Informed consent processes can be challenging when AI technologies are involved. Bearing the important concepts of transparency and explainability in mind when designing consent documents and processes will help to centralise patients/participants’ needs and ensure a fair process.
Answer the following questions to test your understanding of informed consent, transparency and explainability regarding the use of AI technologies in healthcare. +
[[File:Research spelt in bricks.png|center|frameless|600x600px]]
The most well-known and widely used example of research ethics guidelines comes from the World Medical Association, which was established in 1947 after World War II, to address growing concerns about unethical medical practice. [https://eneri.eu/national-re-and-ri-infrastructure/ The Declaration of Helsinki – Ethical principles for medical research involving human subjects], (henceforth, ‘the Declaration’) was first adopted in 1964.
The Declaration set the standard for ethical medical research involving humans. Even though it acts as a guideline rather than a document with international legal implications, the Declaration has had a great influence on the formulation of regulations and legislation of research, as well as the development of other codes of research ethics. Since its inception, the Declaration has been revised several times.
The 37 principles encoded in the Declaration cover a wide range of issues with the primary aim of ensuring the welfare of research participants. Fundamental to this aim is the individual’s rights to self-determination, and the provision of sufficient information to be able to make an informed decision when considering participation in a research study.
Today, there are a profusion codes of ethics and guidelines across the world operating at international, national, organisational, and institutional levels. Some are aimed at setting out behavioural standards for professionals such as lawyers, psychologists or policing services. The largest collection of codes is held by the [https://eur-lex.europa.eu/eli/dir/2010/63/oj Center for the Study of Ethics in the Professions] in Illinois, which contains around 4,000 codes and ethics guidelines. +
[[File:AI Image1.png|center|frameless|600x600px]]
AI, or artificial intelligence, refers to the development of digital systems that can perform tasks that typically require human intelligence.
These tasks include learning, reasoning, problem-solving, perception, language understanding, and speech recognition.
At its core, AI leverages principles from computer science, mathematics, and cognitive psychology to replicate intelligent behaviour in machines.
AI utilises algorithms, data, and computational power to simulate intelligent behaviour, enabling machines to adapt, improve, and perform complex functions autonomously.
Several core scientific concepts underpin the development and functionality of AI. Work your way through the presentation below to hear about some of them:
This list of core scientific concepts in AI is subject to ongoing research and development. The field of AI is rapidly evolving, and new techniques, algorithms, and applications are continuously emerging.
As researchers and scientists make advancements in AI technology and explore novel use cases, the understanding and implementation of these concepts may evolve.
Generative AI is a type of foundation model that is becoming more and more evident in everyday life as well as in healthcare. Test your understanding of generative AI by answering the following questions. +
[[File:Bio3Image2.png|center|frameless|600x600px]]
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Please answer the following question, your responses will be recorded anonymously.
Question: As a member of the research ethics committee, what is your first impression of this proposal? Do you think that you would be in favour of approval for this project?
'''Feedback'''
In complex cases like this, it is always advisable to seek more information before making a decision. Research ethics committee members can do their own research around the topic, most often this involves asking the applicants for further information. REC members may also want to discuss the proposal with colleagues and other stakeholders, and if necessary, they can seek expert advice externally.
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[[File:Imre2.png|center|frameless|600x600px|alt=]]
Given the existing widescale use, and the many unexplored potential benefits, one might reasonably ask why it’s necessary to query the involvement of XR in research. Surely, more research is what we need. What is the ethical dilemma here? The involvement of XR in research actually generates many ethical issues as addressed in the module [https://classroom.eneri.eu/node/266 Extended Reality: Ethics Issues.]
While XR holds incredible potential across many fields, it also has the potential to cause harm and infringe upon certain rights. Furthermore, there are significant gaps in our understanding, especially regarding the long-term psychological, neurological, social, and ethical impacts of XR use. You can watch this video to find out more.
'''Video Transcript'''
XR technology has advanced significantly in recent years, but there are many areas that remain underexplored or not fully understood. These gaps in our understanding span the technical, psychological, social, and health-related aspects of XR.
In particular, the long-term impacts of prolonged XR use are not well understood. This includes psychological factors like emotional regulation, attention span, and memory. Additionally, we don't yet fully understand how extensive use of XR for social interaction might impact real-world social skills and relationships. For instance, might heavy reliance on XR for communication lead to social withdrawal or decreased empathy in the real world?
Other unknowns concern the long-term effects on mental health or the impacts of immersive XR on feelings of detachment or brain plasticity. Might prolonged exposure to XR influence how the brain processes spatial awareness, or motor skills?
The long-term physical impacts are also not well defined. We know that use of XR can cause physical problems like motion sickness, eye strain, muscle strain and fatigue. But might it also have longer term impacts upon eye health or posture etc.?
Furthermore, we don’t know whether certain individuals might be more at risk. For instance, might children or adults with mental health issues be more susceptible to harm? As with all new technologies, research is essential to help us address the unknowns, but not at the expense of risky research.
