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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'''What Is Social Justice? Quiz'''
There is no unified definition of social justice. For this reason, in this module we take a working and broad definition of the concept. We interpret social justice as a guiding principle for achieving a just society, including full and equal participation of individuals in all social institutions; fair, equitable distribution of material and nonmaterial goods; and recognition and support for the needs and rights of individuals. To do that, historical processes of oppression and domination of certain populations need to be taken into account to understand current inequalities and injustices.
Even if you are not already familiar with the terms ‘social justice’ and ‘social injustice’, you are likely already familiar with the concepts. Take a look at the following eight questions and select the correct answer from the options provided. Be sure to click the small left and right arrows to navigate between questions. +
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How confident do you feel about navigating ethics issues related to the use of AI technologies in healthcare domains? Select the most appropriate response in the anonymous poll. +
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Research governance can be thought of as the broad range of regulations, principles, processes and systems that help to ensure good practice in the management and conduct of research. Governance regulations and systems aim to:
*safeguard the interests of those who are affected by the research (for example, participants, researchers, animals, environments, society, and institutions),
*foster accountability and trustworthiness, and
*promote high-quality research.
It is often repeated that research ethics was ‘born in scandal’ because its evolution has been repeatedly triggered by revelations about exploitation of participants in research. For instance, early medical experiments undertaken by physicians and biomedical scientist involved the use of vulnerable individuals (like orphaned children or prisoners) as ‘human guinea pigs’. History shows us that many of the early ethics codes and governance mechanisms were developed in response to such scandals in research.
For instance, the Nuremberg Code was formulated in 1947, as a direct response to the abhorrent medical experiments by Nazi and Japanese doctors during the Second World War. While major scandals in research may not be commonplace nowadays, the development and refinement of research ethics codes and processes is ongoing as new ethical challenges and problems come to light.
Today, there are a multitude of ethics codes, policies and systems for research governance at international, national, organisational, and institutional levels. Finding out which governance mechanisms are relevant to a research study is of primary importance for all researchers when designing and conducting research. +
<div><div>
Before you begin to work your way through the rest of this module, take a moment to think about how you feel about the increasing use of AI technologies in healthcare.
*Are you excited and looking forward to seeing how it develops?
*Are you against the use of AI technologies in healthcare?
*Or do you have some reservations, but think it can be beneficial?
We will ask you to reflect on this again at the end of the module.
</div></div><div><div></div></div> +
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'''Feedback'''
Your opinions and assumptions about the use of XR and related ethics issues will likely be influenced by your prior experiences and understanding. How do you think your current understanding will impact upon your decision-making?
As you work through this module try to keep these thoughts in mind and notice whether your opinions or assumptions about XR in research change. Even if you don’t have any experience of XR, as a REC member who is reviewing this project proposal, you are being asked to make an evidence-informed and balanced judgement call.
If you are unfamiliar with the use of XR, it might be helpful to watch the following video about some of the benefits that XR has to offer.<div><div></div></div> +
<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> +
<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:Tr1.png|center|frameless|300x300px]][https://www.irecs.eu/irecs-training-materials Overview of irecs Training Materials on ENERI Classroom] +
*Start by introducing yourself and the aim of the session:
''Aim: To introduce the ethical challenges related to gene editing. Using a real case, it aims to encourage reflection on ethical issues related to this technology in an interactive way.''<div>
*Continue with an ice-breaker to warm up your audience. Do that before introducing the topic. Ask participants one of these questions, encourage participants to share their answers with all the group:
*What’s one word that comes to mind when you think of gene editing?
*What's one thing about gene editing that makes you feel excited or uneasy
*Continue with a short introduction of the session and plan: Short introduction to gene editing
</div>
#Our focus today: mind-mapping
#Mind mapping in smaller groups
#Plenary discussion<div></div>
+
<div>
*Start by introducing yourself and the aim of the session:
''Aim: To introduce the ethical challenges related to gene editing. Using a real case, it aims to encourage reflection on ethical issues related to this technology in an interactive way.''
<div>
*Continue with an ice-breaker to warm up your audience. Do that before introducing the topic. Ask participants one of these questions, encourage participants to share their answers with all the group:
*What’s one word that comes to mind when you think of gene editing?
*What's one thing about gene editing that makes you feel excited or uneasy
*Continue with a short introduction of the session and plan:
</div>
#Short introduction to gene editing
#Our focus today: mind-mapping
#Mind mapping in smaller groups
#Plenary discussion
<div></div> +
Start the session by welcoming everyone and introducing yourself, followed by an overview of the learning objectives and training program.
'''Learning objectives'''
By taking part in this activity, participants work towards the following learning objectives and become:
1. knowledgeable on basic concepts associated with biobanking and ethical issues
2. able to indicate what ethical issues are pressing regarding biobanking
<span lang="EN-US">3. able to reflect upon some of the ethical issues associated with biobanking</span>
'''Training program'''
*Mindmap on Biobanking
*Mini Lecture on Biobanking and Technology Basics
*<span lang="EN-US">Mini Lecture on Biobanking and Ethics Issues </span>
*<span lang="EN-US">Reflection </span>
*<span lang="EN-US">Statements </span>
*Mindmap and closing
To warm up and engage participants, you can start with an ice-breaker question.
For example, you can use on of the scenarios below:
''Scenario 1:'' Imagine you’re the owner of a biobank filled with all kinds of human samples. If there wouldn’t be any ethical or legal limitations – anything is possible; ''what is the first thing you would do?''
''Scenario 2:'' Imagine you are a world leader with immense power. ''What would be the first step you would take to enhance the ethical standards surrounding biobanking practices?''
Collect some answers and facilitate a short dialogue among the trainees. +
<div>
<span lang="EN-US">Before participating in this activity participants prepare themselves by completing (one of) the e-modules:</span>
</div><div>
*<span lang="EN-US">[https://classroom.eneri.eu/node/236 AI In Healthcare: Technology Basics]</span>
*<span lang="EN-US">[https://classroom.eneri.eu/node/238 AI In Healthcare: Ethics Issues]</span>
*[https://classroom.eneri.eu/node/401 Case studies: AI in Healthcare]
</div> +
<div>
<span lang="EN-US">Before participating in this activity participants prepare themselves by completing (one of) the e-modules:</span>
</div><div>
*<span lang="EN-US">[https://classroom.eneri.eu/node/236 AI In Healthcare: Technology Basics]</span>
*<span lang="EN-US">[https://classroom.eneri.eu/node/238 AI In Healthcare: Ethics Issues]</span>
*[https://classroom.eneri.eu/node/401 Case studies: AI in Healthcare]
</div> +
How can we make sure we're not cutting corners on important safety and ethical standards while we rush through scientific research? During the COVID-19 pandemic, fast scientific work helped us understand the virus, create treatments and vaccines, and figure out how to stay safe. But there were some big questions about protecting the people involved in the research. Should scientists use information and samples from patients who were too sick to agree to it? Should people in studies get a fake treatment if there's already a good one available? Is it okay to intentionally expose healthy volunteers to the virus for research purposes? Watch this annotated video and learn more about ethics and integrity challenges for research during global crises.
Click below to watch the annotated video! +
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Biobanks are specialized repositories that collect and store biological samples and information from various sources (animals, plants, microorganisms, humans, etc.). The focus of this module is on human biobanks, which collect and store biological samples from human donors (e.g., saliva, urine, blood) and health-related data (e.g., health records, family history, lifestyle, genetic, occupational, residential information, etc.) for research purposes and the development of new diagnostic procedures, preventive measures, and treatments. Some biobanks collect health-related data from donors throughout their life, and researchers may continue to access and make use of this data after donors’ demise.
These repositories play a crucial role in advancing biomedical research, by providing scientists with access to a diverse array of high-quality biological materials and continuously updated health-related data. Biobanks ensure the preservation of sample integrity, allowing for researchers to conduct longitudinal studies and other investigations into various health conditions at multiple scales.
For instance, by analyzing samples and data, researchers can search for biological markers, investigate the relationship between biological markers and the sensitivity of diseases to treatment, the aggressiveness of diseases, progression, risk of death, as well as study the genetic and environmental factors that influence the development of certain diseases.
Legal instruments and guidance govern biobank operations to protect the autonomy and dignity of donors, along with their fundamental rights (e.g., private life and data protection) while also advancing the societal benefit of conducting research to address the key public health challenges.
Overall, biobanks contribute significantly to the progress of medical science and personalized medicine. +
Across disciplines, case-based learning (CBL) is a well-established method that encourages higher levels of cognition by having students apply their knowledge to real-world or fictional situations (see Bloom's Taxonomy or Relational/extended abstract levels of learning in SOLO taxonomy).
Learners usually '''work in groups''' on case studies, which are narratives with one or more characters and/or scenarios. The cases pose a disciplinary issue or issues, to which learners come up with remedies while working with an instructor.'"`UNIQ--ref-000003A6-QINU`"''"`UNIQ--ref-000003A7-QINU`"''"`UNIQ--ref-000003A8-QINU`"' Case studies are an effective teaching tool that engages learners, stimulates critical thinking, and enables a deeper understanding of real-life situations. The use of case studies is a deliberate process designed to promote active engagement, critical thinking, and deeper understanding among students. Prior research (e.g., Löfström & Tammeleht, 2023 citing: Bagdasarov et al., 2012; Johnson et al., 2012; McWilliams & Nahavandi, 2006; Nonis & Swift, 2001; O'Leary & Cotter, 2000) has identified the use of cases to be beneficial in RE/RI teaching/learning.'"`UNIQ--ref-000003A9-QINU`"' Understanding why and how learning occurs is essential for improving teaching, and as a result, understanding how learners learn can be accessed through an awareness of learning within the framework of research ethics and integrity.'"`UNIQ--ref-000003AA-QINU`"'
'''It begins with the careful selection''' of relevant case studies that align with the learning objectives of the course. These cases should not only be current and authentic but should also reflect the students' interests and experiences and provide them with a tangible connection to the course material. RE/RI case-studies can be easily found on [https://embassy.science/wiki-wiki/index.php/Main_Page the Embassy of Good Science].
'''Once a suitable case study has been selected''', the teaching process usually begins with an introduction to the case (e.g., providing context and background information. This first step is crucial to ensuring that students understand the importance of the case study and its relevance to the wider course material. This practice will help students to get acquainted with the topic. In addition to case-studies, also vignettes have been used in RE/RI education to reflect on real-life situations including an explicit or implicit conflict. Trainers may identify a specific ethical/integrity issue on which learners are asked to reflect on.'"`UNIQ--ref-000003AB-QINU`"'
'''As learners delve into the case study''', they are asked to actively engage with the material. This means more than just passive reading; learners are encouraged to take notes, ask questions, and identify important themes or patterns contained in the case study. By promoting active reading practises, instructors aim to encourage the development of deeper understanding of the complexity of real-world problems and the various factors at play.
'''The initial reading''' is often followed by common discussion and analysis. With the guidance of the trainer, learners are encouraged to share their interpretations of the case study and explore different perspectives. Discussions can be structured around questions, which encourage critical thinking, consider alternative viewpoints and evaluate the implications of different approaches in order to move from uni- and multistructural levels to relational and extended abstract levels.
Central to the case study approach is the opportunity for learners to '''apply theoretical concepts and principles to real-life situations'''. Instructors help learners make connections between the case study and the course material by encouraging them to analyse the case through the lens of relevant theories, models or frameworks. This process not only deepens students' understanding of theoretical concepts, but also enhances their ability to apply these concepts in practical contexts.
In addition, case studies provide a platform to foster problem-solving skills. Learners are tasked with finding creative solutions to the challenges presented in the case, evaluating the feasibility of various options, and developing a reasoned plan of action. Through this process, learners learn to deal with complex problems, weigh competing interests, and make informed decisions based on facts and analyses.
'''Finally''', case studies can serve as a valuable assessment tool, allowing instructors to evaluate learners' mastery of the content of the course and their ability to apply theoretical concepts to real-world scenarios. Assignments may include written reflections, group presentations, or class discussions based on the case study so that students can demonstrate their learning and receive constructive feedback from fellow students and instructors.
Case-based approaches are utilised in [[Initiative:639c9790-bf80-4f21-9fc0-8027b4c0cfe0|ENERI]], [[Initiative:Fa186292-623f-4b6f-a21e-44250c057f15|RID-SSISS]], [[Initiative:0582c7af-35eb-4def-b74e-c884f29965da|Path2Integrity]], [[Initiative:F9656f91-a514-44ff-9264-d6b3414fdddc|INTEGRITY]] and [[Initiative:8eed30fd-c2ed-44d1-9752-753092bd350e|VIRT<sup>2</sup>UE]].
'"`UNIQ--references-000003AC-QINU`"'
Across disciplines, case-based learning (CBL) is a well-established method that encourages higher levels of cognition by having students apply their knowledge to real-world or fictional situations (see Bloom's Taxonomy or Relational/extended abstract levels of learning in SOLO taxonomy).
Learners usually '''work in groups''' on case studies, which are narratives with one or more characters and/or scenarios. The cases pose a disciplinary issue or issues, to which learners come up with remedies while working with an instructor.'"`UNIQ--ref-000003D8-QINU`"''"`UNIQ--ref-000003D9-QINU`"''"`UNIQ--ref-000003DA-QINU`"' Case studies are an effective teaching tool that engages learners, stimulates critical thinking, and enables a deeper understanding of real-life situations. The use of case studies is a deliberate process designed to promote active engagement, critical thinking, and deeper understanding among students. Prior research (e.g., Löfström & Tammeleht, 2023 citing: Bagdasarov et al., 2012; Johnson et al., 2012; McWilliams & Nahavandi, 2006; Nonis & Swift, 2001; O'Leary & Cotter, 2000) has identified the use of cases to be beneficial in RE/RI teaching/learning.'"`UNIQ--ref-000003DB-QINU`"' Understanding why and how learning occurs is essential for improving teaching, and as a result, understanding how learners learn can be accessed through an awareness of learning within the framework of research ethics and integrity.'"`UNIQ--ref-000003DC-QINU`"'
'''It begins with the careful selection''' of relevant case studies that align with the learning objectives of the course. These cases should not only be current and authentic but should also reflect the students' interests and experiences and provide them with a tangible connection to the course material. RE/RI case-studies can be easily found on [https://embassy.science/wiki-wiki/index.php/Main_Page the Embassy of Good Science].
'''Once a suitable case study has been selected''', the teaching process usually begins with an introduction to the case (e.g., providing context and background information. This first step is crucial to ensuring that students understand the importance of the case study and its relevance to the wider course material. This practice will help students to get acquainted with the topic. In addition to case-studies, also vignettes have been used in RE/RI education to reflect on real-life situations including an explicit or implicit conflict. Trainers may identify a specific ethical/integrity issue on which learners are asked to reflect on.'"`UNIQ--ref-000003DD-QINU`"'
'''As learners delve into the case study''', they are asked to actively engage with the material. This means more than just passive reading; learners are encouraged to take notes, ask questions, and identify important themes or patterns contained in the case study. By promoting active reading practises, instructors aim to encourage the development of deeper understanding of the complexity of real-world problems and the various factors at play.
'''The initial reading''' is often followed by common discussion and analysis. With the guidance of the trainer, learners are encouraged to share their interpretations of the case study and explore different perspectives. Discussions can be structured around questions, which encourage critical thinking, consider alternative viewpoints and evaluate the implications of different approaches in order to move from uni- and multistructural levels to relational and extended abstract levels.
Central to the case study approach is the opportunity for learners to '''apply theoretical concepts and principles to real-life situations'''. Instructors help learners make connections between the case study and the course material by encouraging them to analyse the case through the lens of relevant theories, models or frameworks. This process not only deepens students' understanding of theoretical concepts, but also enhances their ability to apply these concepts in practical contexts.
In addition, case studies provide a platform to foster problem-solving skills. Learners are tasked with finding creative solutions to the challenges presented in the case, evaluating the feasibility of various options, and developing a reasoned plan of action. Through this process, learners learn to deal with complex problems, weigh competing interests, and make informed decisions based on facts and analyses.
'''Finally''', case studies can serve as a valuable assessment tool, allowing instructors to evaluate learners' mastery of the content of the course and their ability to apply theoretical concepts to real-world scenarios. Assignments may include written reflections, group presentations, or class discussions based on the case study so that students can demonstrate their learning and receive constructive feedback from fellow students and instructors.
Case-based approaches are utilised in [[Initiative:639c9790-bf80-4f21-9fc0-8027b4c0cfe0|ENERI]], [[Initiative:Fa186292-623f-4b6f-a21e-44250c057f15|RID-SSISS]], [[Initiative:0582c7af-35eb-4def-b74e-c884f29965da|Path2Integrity]], [[Initiative:F9656f91-a514-44ff-9264-d6b3414fdddc|INTEGRITY]] and [[Initiative:8eed30fd-c2ed-44d1-9752-753092bd350e|VIRT<sup>2</sup>UE]].
'"`UNIQ--references-000003DE-QINU`"'
[[File:Woman using microscope.jpg|alt=woman using microscope|center|frameless|600x600px|woman using microscope]] +
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From the eradication of genetic diseases to potential human enhancements, and the place of genetically modified organisms in agriculture, the number of potential uses of gene editing is vast. This module touches upon a wide variety of ethics issues that are associated with research involving gene editing. It includes ethics issues related to both human and non-human applications and the way in which these issues might be assessed and governed. +
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'''What is gene editing?'''
Genes are made up of sequences of DNA that are arranged at specific locations on chromosomes in the nucleus of the cells that make up an organism. Gene editing technology can be used to make precise changes to the DNA of living organisms, including humans, plants, and animals. It is also often referred to as genome editing because a change to specific genes also means a change to the genome.
The genome consists of the entire set of DNA found in a cell, which in humans consists of around 20,000 to 25,000 protein-coding genes on 23 pairs of chromosomes, as well as a small chromosome in the cell's mitochondria.
The goal of gene editing is to modify or knock out specific genes to achieve desired traits or to correct genetic defects. This is achieved by adding, removing, or replacing specific sequences using programmed proteins or protein/ ribonucleic acid (RNA) complexes.
In this module we will consider how and why gene editing is used in both human and non-human applications as well as some of the associated risks. +
