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.
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1
''Target audience: Secondary school students, bachelor and master students, doctoral students and early career researchers''
Path 2 integrity developed a series of [https://www.path2integrity.eu/ri-materials learning cards] focusing on students in high schools ([https://www.path2integrity.eu/ri-materials Path2Integrity learning cards S]) on bachelor students, ([https://www.path2integrity.eu/ri-materials Path2Integrity learning cards M]) alongside a dedicated handbook and doctoral students ([https://www.path2integrity.eu/ri-materials Path2Integrity learning cards Y]). Each set of learning cards comes with a [https://www.path2integrity.eu/ri-materials handbook for educators] ([https://www.path2integrity.eu/ri-materials S-Series handbook], [https://www.path2integrity.eu/ri-materials M-Series handbook], [https://www.path2integrity.eu/ri-materials Y-Series handbook]) +
''Target Audience: undergraduate students, early career researchers.''
The [https://h2020integrity.eu/ INTEGRITY] project aims to empower students and early career researchers by developing the capacity of participants to identify, consider, and address integrity concerns in research procedures. Empowerment stimulates a pro-active attitude in participants of the courses, helping them to actively address and deal with integrity issues they encounter in their studies or research. The project developed a specific training tool for [https://h2020integrity.eu/toolkit/tools-undergraduate-students/integrity-games/ undergraduate] students, which poses a series of dilemmas about academic integrity. +
Utilizing online training resources is another way to put blended learning into practice. This method mixes traditional in-person instruction with the usage of the internet to let students create their own learning experiences. Trainees can gain from direction and engagement with a trainer while having access to flexible and interactive training options outside of the classroom by combining in-person and online training methods. The 'conventional' learning resources produced by the ROSIE project (refer to the [https://rosie-project.eu/rosie-knowledge-hub/ ROSiE Knowledge Hub]) can be utilized in conjunction with the online training resources for self-directed learning developed by ROSiE to facilitate blended learning in the classroom.
Training materials on responsible open science can be found for the fields of [https://zenodo.org/records/10799656 Social Sciences], [https://zenodo.org/records/10799691 Natural Sciences], [https://zenodo.org/records/10800651 Humanities], [https://zenodo.org/records/10801617 Health and Life Sciences] and [https://zenodo.org/records/10801722 Citizen Science]. In addition, the ROSiE project created a [https://zenodo.org/records/10795319 collection of case studies] that can be use in the traditional and/or online ROSiE training. Moreover, six different modules on responsible open science can be found [[Guide:E525ee0d-0d7e-4ba5-b19b-89e4a5029b2f|here]], on the Embassy of Good Science platform +
There are different ways of using AI, not only to generate text, but also to work with your own material (proofreading, changing style, transcription). Researchers should be transparent about how they have used AI tools, as they would be about any other tools and methods. The most important requirement for any researcher is to CHECK the material generated by AI, for example in a systematic review.
Fairness, transparency and ethical considerations are all important factors in AI systems for trainers to consider when teaching, fostering a deeper understanding and commitment to responsible AI among their participants. Although training materials focusing on AI are still in development, this module gives trainers insight on possible material to be used. +
'''''Target audience:''' Doctoral students and early career researchers and Senior researchers and RERI experts''
The [https://printeger.eu/upright/toc/obas-introduction/ Upright training] gives the opportunity to reflect on several dilemmas from the [https://www.eur.nl/sites/corporate/files/dilemmagame-mrg.pdf “Dilemma Game. Professionalism and Integrity in Research”]. Specifically, the Upright training proposes the following dilemmas: [https://printeger.eu/upright/toc/dilemma-with-a-little-help/ With a little help], [https://printeger.eu/upright/toc/dilemma-mutual-favours/ Mutual favours], [https://printeger.eu/upright/toc/dilemma-sharing-data/ Sharing data], [https://printeger.eu/upright/toc/dilemma-so-close/ So close], [https://printeger.eu/upright/toc/dilemma-different-results/ Different results], [https://printeger.eu/upright/toc/dilemma-put-your-supervisor-first/ Put your supervisor first], [https://printeger.eu/upright/toc/dilemma-flexible-scope/ Flexible scope], [https://printeger.eu/upright/toc/dilemma-outliers/ Outliers], and [https://printeger.eu/upright/toc/dilemma-invalid-data/ Invalid data]. +
'''''Target audience:''' Secondary school students, bachelor and master students, doctoral students and early career researchers''
Using the [https://www.path2integrity.eu/ Path2Integrity] learning materials and methods in an adaptable and sustainable manner is the main goal of the Path2Integrity training programme for educators (P2ITE), which aims to improve educators' and teachers' competencies, confidence, and abilities to teach research integrity effectively. This includes engaging and creative teaching and learning techniques like role-playing and storytelling. Path 2 integrity developed a series of [https://www.path2integrity.eu/ri-materials learning cards] focusing on students in high schools ([https://www.path2integrity.eu/ri-materials Path2Integrity learning cards S]) on bachelor students, ([https://www.path2integrity.eu/ri-materials Path2Integrity learning cards M]) alongside a dedicated handbook and doctoral students ([https://www.path2integrity.eu/ri-materials Path2Integrity learning cards Y]). Each set of learning cards comes with a [https://www.path2integrity.eu/ri-materials handbook for educators] ([https://www.path2integrity.eu/ri-materials S-Series handbook], [https://www.path2integrity.eu/ri-materials M-Series handbook], [https://www.path2integrity.eu/ri-materials Y-Series handbook]) +
[https://printeger.eu/ PRINTEGER] project, aims to strengthen research integrity by fostering a culture where integrity is integral to excellent research, beyond just external regulation. The project seeks to improve integrity governance by focusing on researchers’ everyday practices within a complex research environment +
'''''TARGET audience:''' bachelors and masters students, doctoral students and early career researchers''
The [https://printeger.eu/upright/toc/ Upright training] developed by the [https://printeger.eu/ PRINTEGER] projects provides the opportunity to have an overview of common research integrity issues in the academia. The training programme has been developed with the aim of raising awareness among “newcomers” to RI and RE. Besides providing knowledge and information on the topic, the training programme contributes to the development of the moral character of researchers by encouraging reflection on specific dilemmas and cases.
With its introductory module, it aims to give students a first look at why research integrity matters. This module is based on the film On Being A Scientist, produced by Leiden University. This provides a rough overview of the subject and can be found here: [https://printeger.eu/upright/toc/obas-introduction/ On Being A Scientist]. The film On Being A Scientist can be split up into nine episodes. Each episode focuses on a specific topic. The movie can be also found [https://www.youtube.com/watch?v=tCgZSjoxF7c here]. +
'''''TARGET audience:''' bachelors and masters students, doctoral students and early career researchers''
The [https://printeger.eu/upright/toc/ Upright training] developed by the [https://printeger.eu/ PRINTEGER] projects provides the opportunity to have an overview of common research integrity issues in the academia. The training programme has been developed with the aim of raising awareness among “newcomers” to RI and RE. Besides providing knowledge and information on the topic, the training programme contributes to the development of the moral character of researchers by encouraging reflection on specific dilemmas and cases.
With its introductory module, it aims to give students a first look at why research integrity matters. This module is based on the film On Being A Scientist, produced by Leiden University. This provides a rough overview of the subject and can be found here: [https://printeger.eu/upright/toc/obas-introduction/ On Being A Scientist]. The film On Being A Scientist can be split up into nine episodes. Each episode focuses on a specific topic. The movie can be also found [https://www.youtube.com/watch?v=tCgZSjoxF7c here]. +
'''''Target audience''': Bachelor and master students, doctoral students and early career researchers.''
Besides the introductory module, the PRINTEGER Upright training provides [https://printeger.eu/upright/toc/ modules] focusing on specific RE and/or RI issues. These modules address topics in relation the research misconduct, questionable research practices and more research ethics-related topics. Depending on the complexity of the topic, these modules can be used for students and academics with different levels of RE/RI-related competencies. +
'''''Target audience:''' Secondary school students, bachelor and master students, doctoral students and early career researchers''
Using the [https://www.path2integrity.eu/ Path2Integrity] learning materials and methods in an adaptable and sustainable manner is the main goal of the Path2Integrity training programme for educators (P2ITE), which aims to improve educators' and teachers' competencies, confidence, and abilities to teach research integrity effectively. This includes engaging and creative teaching and learning techniques like role-playing and storytelling. Path 2 integrity developed a series of [https://www.path2integrity.eu/ri-materials learning cards] focusing on students in high schools ([https://www.path2integrity.eu/ri-materials Path2Integrity learning cards S]) on bachelor students, ([https://www.path2integrity.eu/ri-materials Path2Integrity learning cards M]) alongside a dedicated handbook and doctoral students ([https://www.path2integrity.eu/ri-materials Path2Integrity learning cards Y]). Each set of learning cards comes with a [https://www.path2integrity.eu/ri-materials handbook for educators] ([https://www.path2integrity.eu/ri-materials S-Series handbook], [https://www.path2integrity.eu/ri-materials M-Series handbook], [https://www.path2integrity.eu/ri-materials Y-Series handbook]) +
'''''Target Audience:''' undergraduate students, early career researchers.''
The [https://h2020integrity.eu/ INTEGRITY] project aims to empower students and early career researchers by developing the capacity of participants to identify, consider, and address integrity concerns in research procedures. Empowerment stimulates a pro-active attitude in participants of the courses, helping them to actively address and deal with integrity issues they encounter in their studies or research. The project developed a specific training tool for [https://h2020integrity.eu/toolkit/tools-undergraduate-students/integrity-games/ undergraduate] students, which poses a series of dilemmas about academic integrity. +
'''''Target Audience:''' undergraduate students, early career researchers.''
The [https://h2020integrity.eu/ INTEGRITY] project aims to empower students and early career researchers by developing the capacity of participants to identify, consider, and address integrity concerns in research procedures. Empowerment stimulates a pro-active attitude in participants of the courses, helping them to actively address and deal with integrity issues they encounter in their studies or research. The project developed a specific training tool for [https://h2020integrity.eu/toolkit/tools-undergraduate-students/integrity-games/ undergraduate] students, which poses a series of dilemmas about academic integrity. +
Utilizing online training resources is another way to put blended learning into practice. This method mixes traditional in-person instruction with the usage of the internet to let students create their own learning experiences. Trainees can gain from direction and engagement with a trainer while having access to flexible and interactive training options outside of the classroom by combining in-person and online training methods. The 'conventional' learning resources produced by the ROSIE project (refer to the [https://rosie-project.eu/rosie-knowledge-hub/ ROSiE Knowledge Hub]) can be utilized in conjunction with the online training resources for self-directed learning developed by ROSiE to facilitate blended learning in the classroom.
Training materials on responsible open science can be found for the fields of [https://zenodo.org/records/10799656 Social Sciences], [https://zenodo.org/records/10799691 Natural Sciences], [https://zenodo.org/records/10800651 Humanities], [https://zenodo.org/records/10801617 Health and Life Sciences] and [https://zenodo.org/records/10801722 Citizen Science]. In addition, the ROSiE project created a [https://zenodo.org/records/10795319 collection of case studies] that can be use in the traditional and/or online ROSiE training. Moreover, six different modules on responsible open science can be found [[Guide:E525ee0d-0d7e-4ba5-b19b-89e4a5029b2f|here]], on the Embassy of Good Science platform +
There are different ways of using AI, not only to generate text, but also to work with your own material (proofreading, changing style, transcription). Researchers should be transparent about how they have used AI tools, as they would be about any other tools and methods. The most important requirement for any researcher is to CHECK the material generated by AI, for example in a systematic review.
Fairness, transparency and ethical considerations are all important factors in AI systems for trainers to consider when teaching, fostering a deeper understanding and commitment to responsible AI among their participants. Although training materials focusing on AI are still in development, this module gives trainers insight on possible material to be used. +
'''''Target audience:''' doctoral students and early career researches, senior researchers, and RE/RI experts''
The [https://h2020integrity.eu/toolkit/tools-researchers-supervisors/ INTEGRITY] project developed training materials for supervisors to encourage reflection on the ethical challenges that supervision brings about. These consist of an online course (SPOC) and a diner pensant script. +
'''''Target audience:''' doctoral students and early career researches, senior researchers, and RE/RI experts''
The [https://h2020integrity.eu/toolkit/tools-researchers-supervisors/ INTEGRITY] project developed training materials for supervisors to encourage reflection on the ethical challenges that supervision brings about. These consist of an online course (SPOC) and a diner pensant script. +
<span lang="EN-US">I</span>t is strongly recommended to circulate the relevant [https://classroom.eneri.eu/node/377 "technology basics" e-modules] among participants prior to the training. Trainers can consult [https://www.irecs.eu/irecs-training-materials this page] to get some guidance on how to navigate the concent of the modules. Trainers should select the most pertinent modules from those developed by the project, aligning their choices with the session's specific topic.
[[File:Image irecs training.png|thumb|Guidance for irecs training materials available at https://www.irecs.eu/irecs-training-materials]] +
<span lang="EN-US">'''Introduce yourself and share the plan for the session presented below:'''</span>
*<span lang="EN-US">Ice-breaker</span>
*<span lang="EN-US">Short introductory lecture</span>
*<span lang="EN-US">Case discussion in smaller groups</span>
*<span lang="EN-US">Plenary discussion</span>
'''Introduce the ''Learning Objectives -'' a<span lang="EN-US">fter the session participants are able to:</span>''' <div>
#''<span lang="EN-US">Weigh the potential harms and benefits of different areas of gene editing. </span>''
#''<span lang="EN-US">Reflect upon some of the ethics issues (like dual use/misuse or long-term ethical and societal implications) associated with gene editing.</span>''
#''<span lang="EN-US">Recognize ethical and safety concerns associated with gene editing techniques and their applications.</span>''
</div><span lang="EN-US">'''Use a warm up question to introduce the topic:'''</span>
<span lang="EN-US">Use this as an interactive exercise before starting with the session. Ask participants one of these questions, encouraging participants to share their answers with the group:</span> <div>
*''<span lang="EN-US">What’s one word that comes to mind when you think of gene editing?</span>''
*<span lang="EN-US">''What's one aspect of gene editing that makes you feel excited or uneasy?''</span>
</div><span lang="EN-US">'''Briefly introduce the topic:'''</span><div>
''<span lang="EN-US">Gene editing is a transformative and evolving technology that has a big potential for addressing problems in healthcare, agriculture, among others. However, it also raises critical ethical questions since it can have severe societal and environmental long-term 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.</span>''
</div><div>
''<span lang="EN-US">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 to gene editing.</span>''
</div><div>
'''<u><span lang="EN-US">Trainer Tip</span></u><span lang="EN-US">:</span>''' <span lang="EN-US">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.</span>
</div><div></div>
[[File:A_child_using_building_blocks.jpeg|600px]]
Watch the video below to learn about Hunter syndrome, its treatments and effects.
[[File:Irecs_What_is_Hunter_syndrome.mp4|600px|thumb|centre]]
====Video Transcript====
What is Hunter syndrome?
Hunter syndrome is a rare genetic disorder that primarily affects males. It is part of a group of diseases known as mucopolysaccharidoses or MPS, which are caused by the body's inability to break down certain complex sugars called glycosaminoglycans or GAGs. For people with Hunter syndrome, a lack of the enzyme iduronate-2-sulfatase or IDS, means that GAGs build up inside the body leading to a wide variety of symptoms including developmental issues, physical problems and mental decline. For example:
*Physical development impacts like coarse facial features, thickened skin, enlarged tongue, and joint stiffness.
*Developmental delays in children affecting motor skills, speech, and learning.
*Respiratory problems with frequent respiratory infections, sleep apnoea, and other breathing difficulties.
*Hearing loss.
*Enlarged liver and spleen, leading to abdominal distension.
*Heart problems with heart valve abnormalities and other cardiac issues.
*Skeletal abnormalities like joint stiffness, short stature, and abnormal bone development.
*The onset of the disease is usually between the ages of 2 and 4 years and developmental decline is usually evident between the ages of 18 and 36 months.
There is currently no cure for Hunter syndrome, but treatments can help to manage the symptoms and improve quality of life. Options include:
Enzyme replacement therapy (ERT). Regular, often weekly, infusions of a synthetic version of the missing enzyme can help reduce the buildup of GAGs. However, the enzyme is not able to pass the blood-brain-barrier, so this form of treatment does not help to protect against brain damage.
#<br /> Symptomatic treatments for specific issues including physical therapy for joint problems, medications for respiratory and heart problems, and surgical interventions for specific complications.
#<br /> Despite treatment, those with severe disease usually die in their teens. Those with a milder form of Hunter syndrome might live with more gradual deterioration in health until middle age.
