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
3
In this step, you will learn how to add your own theme pages on all topics related to research ethics and research integrity.
Click the video below to see how you can make your own!
<div class="video-button" data-href="https://www.youtube.com/embed/nuxciN6pT0g">
<span class="video-button-label">Adding Theme Pages</span>
<span class="video-button-duration">0:58 min</span>
</div> +
Now we can start making content! Once you have logged in, you should see the option to add content on the left of your screen.
Click this link, and then from the next screen select the "Interactive content" option.
From the following menu, you can now select from one of 30+ different kinds of interactive content to make. Clicking on one of these options will take you to a page where you can begin creating the selected content!
'''Not sure which kind of content to make or how to create it?'''
Once a kind of content has been selected from the list, you will see these buttons at the top of your screen:
[[File:H5p guidance.png|center|thumb|600x600px|'Tutorial' and 'Example' buttons]]
Clicking the 'Tutorial' button will open a video explaining how to create the content type you have selected, and clicking the 'Example' button will take you to a page where you can see what a finished piece of content will look like!
For can also find more examples of H5P content listed [https://h5p.org/content-types-and-applications on the H5P website.] +
[[File:M3..png|center|frameless|600x600px]]
Question: As a member of a 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? +
[[File:M3.png|center|frameless|600x600px]]
'''Social Justice in Research cont.'''
While it may be difficult to imagine that research conducted nowadays could involve the same degree of social injustice as the Tuskegee Syphilis Study, social injustice remains a challenge that researchers must address. Here are some short examples of how social injustice might be perpetuated through contemporary research. Click on the different images to see examples of situations in which social justice is relevant and the consequences of not taking this into account. +
[[File:Mm2.png|center|frameless|600x600px]]
In the rest of this module, we will be focussing specifically upon research collaborations that bring together parties from higher-income and lower-income settings. Often, these partnerships involve local groups or communities who are not researchers but nevertheless contribute to the research in a significant manner via participation or knowledge sharing etc. While these partnerships can be extremely fruitful for all concerned, they can also pose challenges for the equitable distribution of research benefits as described in the next section. +
[[File:AI Img2.png|center|frameless|600x600px]]
<div><div>
With the integration of AI technologies into healthcare, shaping diagnostic tools, treatment plans, and patient care, critical questions emerge about data-related ethics issues.
Here are some examples:
</div></div><div></div> +
[[File:Integrity on printing blocks.png|center|frameless|600x600px]]
[https://www.gov.uk/guidance/protected-plants-protection-surveys-and-licences The European Federation of Academies of Sciences and Humanities (ALLEA)], describes research integrity as:
"crucial to preserving the trustworthiness of the research system and its results. It encompasses the basic responsibility of the research community to formulate the principles of research, to define the criteria for proper research behaviour, to maximise the quality, reliability, and robustness of research and its results, and to respond adequately to threats to, or violations of, good research practices." (ALLEA, 2023:3)
The most well-known guidelines for research integrity, [https://www.globalcodeofconduct.org/ The Singapore Statement on Research Integrity] was published in 2010. The statement was the result of an international, collaborative effort to develop more comprehensive standards, codes and policies to promote research integrity at local and global levels.
The Singapore Statement calls for:
*Honesty in all aspects of research
*Accountability in the conduct of research
*Professional courtesy and fairness in working with others
*Good stewardship of research on behalf of others
In addition, the statement outlines 14 professional responsibilities to ensure the integrity of research.
These responsibilities include the need for researchers to take responsibility for the integrity of their research, adherence to regulations, the use of appropriate research methods, the keeping of good research records, prompt and open sharing of research findings, responsible authorship and publication acknowledgement practices, participation in peer review, declaration of any conflicts of interest, clear public communication, reporting and responding to irresponsible research practises, fostering research environments that support research integrity, and recognising societal considerations relevant to their research.
What is the primary function of generative AI? +
[[File:Imre3.png|center|frameless|600x600px]]
<div><div>
As you learn about the proposed research study, please refer to the downloaded document: The use of XR technologies in research: A checklist for research ethics committees to help you spot the possible ethical pitfalls. Note that while XR includes virtual reality, augmented reality, and mixed reality, this case study involves only the use of virtual reality or VR. Remember that you will be asked to make an assessment about whether to approve the study, ask for changes to be made, seek further information, or to disallow the study. Make a note of any points or questions that arise for you.
</div></div><div></div> +
1) Introduce yourself and share the plan for the session.
2) Introduce the learning objectives.
3) Use warm up question to introduce the topic: 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:
o What’s one word that comes to mind when you think of [the topic of the session]?
<span lang="EN-US">o What's one aspect of [this topic] that makes you feel excited or uneasy?</span>
4) Briefly introduce the topic (use the [https://www.irecs.eu/irecs-training-materials irecs modules] for inspiration) +
Participants are divided into groups of 6 or fewer, with each participant in each group assigned one of the following roles:<div>
*'''<span lang="EN-US">Healthcare professional (physician)</span>'''
*'''<span lang="EN-US">Representative of “HealthAI”</span>'''
*'''Patient rights advocacy'''
*'''Medical ethicist'''
*'''Representative of human resources of the hospital'''
*'''Representative of a health insurance company'''</div> +
Participants are divided into groups of 6 or fewer, with each participant in each group assigned one of the following roles:
<div>
*'''<span lang="EN-US">Healthcare professional (physician)</span>'''
*'''<span lang="EN-US">Representative of “HealthAI”</span>'''
*'''Patient rights advocacy'''
*'''Medical ethicist'''
*'''Representative of human resources of the hospital'''
*'''Representative of a health insurance company'''
</div> +
<div>
*<span lang="EN-US">Present the irecs video on the CRISPR-Cas9 case of Lulu and Nana.</span> <span lang="EN-US">You can find it here: [https://classroom.eneri.eu/node/308 <u>A Case Of Gene Editing In Human Embryos</u>]</span>
*<span lang="EN-US">After the video, have a brief discussion by asking participants the following questions:</span>
What are the main ethical issues in this case?
<span lang="EN-US">How do these issues relate to societal or regulatory concerns?</span>
</div>'''<u><span lang="EN-US">Trainer Tip</span></u><span lang="EN-US">:</span>''' <span lang="EN-US">Allow for a brief open discussion but '''keep it focused''' to ensure you stay within the allocated time.</span> +
<div>
*<span lang="EN-US">Present the irecs video on the CRISPR-Cas9 case of Lulu and Nana.</span> <span lang="EN-US">You can find it here: [https://classroom.eneri.eu/node/308 <u>A Case Of Gene Editing In Human Embryos</u>]</span>
*<span lang="EN-US">After the video, have a brief discussion by asking participants the following questions:</span>
What are the main ethical issues in this case?
<span lang="EN-US">How do these issues relate to societal or regulatory concerns?</span>
</div>'''<u><span lang="EN-US">Trainer Tip</span></u><span lang="EN-US">:</span>''' <span lang="EN-US">Allow for a brief open discussion but '''keep it focused''' to ensure you stay within the allocated time.</span> +
1) Introduce yourself and share the plan for the session.
2) Introduce the learning objectives.
3) Use warm up question to introduce the topic: 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:
o What’s one word that comes to mind when you think of [the topic of the session]?
<span lang="EN-US">o What's one aspect of [this topic] that makes you feel excited or uneasy?</span>
4) Briefly introduce the topic (use the [https://www.irecs.eu/irecs-training-materials irecs modules] for inspiration) +
Introduce the technique of mind-mapping stating why it is useful and how you are going to use it in the session. Mind-mapping is combined with a presentation of a case extracted from the irecs modules Gene editing: Ethics issues ([https://classroom.eneri.eu/node/308 <u><span lang="EN-US">A Case Of Gene Editing In Human Embryos Eneri</span></u>]<u><span lang="EN-US">)</span></u>. You can use the information below to guide your participants:
<div>
'''3.1 Mind-mapping: explain what it is and why is it useful'''
</div><div>
''Mind-mapping: A brainstorming technique to visually organize information in groups and subgroups''
</div><div>
*''Encourages lateral thinking, pushing to explore and investigate a topic from different angles''
*''Organizing thoughts and concepts and identifying knowledge gaps''
*''Reflecting while creating, allowing for an informal and comfortable space for reflexivity''
''Allows to use it in combination with a case, as we will do today!''
'''3.2 Explain and provide the instructions for the exercise.'''
It is important that you do that before the presentation of the case, so participants can focus on one thing at a time. Before showing the case, you should provide the following instructions - it is better if the instructions are in a slide:
*''First - division in subgroups, provision of jamboard/whiteboard''
*''Second - Screening of the case''
*''Third - Go to the Jamboard/whiteboard!''
</div>
*''Step 1 – assign a spokesperson in your group!''
*''Step 2 – 5 min. Individual reflection - write single words related to the case on the jamboard. Do this step in silence. What are the words that come to your mind after hearing and watching this case?''
*''Step 3 – 10 min. Start talking as a group. Organise the small concepts in big groups.''
*''Step 4 – 10 min. Refine each category into smaller subgroups.''
*''Step 5 – 15 min. Back to plenary, discussion and reporting back.''<div><div>
<u>Trainer tip</u>: Prepare the jamboards/physical boards and some sticky notes of various colors previously, and have the instructions always available for participants, so they can do their exercise autonomously. In step 2, you can decide if you want to give categories (such as: ''as: '''Benefits, Harms, Principles, Responsibilities''''') or if you want to keep the decision of the categories to participants.
<div>
'''3.3 Present the case, using the irecs video on the CRISPR-Cas9 case of Lulu and Nana.'''
You can find it here: [https://classroom.eneri.eu/node/308 <u>A Case Of Gene Editing In Human Embryos Eneri</u>] - screening the video makes the session more interactive. If you cannot screen it, you can prepare a slide and read the text outloud.
</div><div>
'''3.4 After the video, divide the group in smaller subgroups and start the exercise of mind-mapping:'''
*Divide participants into subgroups (4-5 members). Provide each group with a white board/digital board and some sticky notes of various colors.
*Remind participants to assign a spokesperson in each group before they start the exercise! This is an important step!
*Always keep the instructions (in the previous section) on the screen.
*Walk around the subgroups (or jump from room to room if you are providing the training online) to make sure that they are following the steps.
*You can spark conversation by using the following example questions in case some groups are quiet:
*What are the main ethical concerns related to this case?
*What potential benefits could result from this technology?
*What potential harms might arise from using this technology? Why?
*What principles (e.g., justice, autonomy) are most relevant to this case?
*How do these issues appear in practice? What is an action that can arise of those?
</div><div>
<u>Trainer tip</u>: Keep track of time. You can have small breaks and check in with each subgroup while jumping from step to step to make sure that all the group is following the structure of the exercise.
'''3.5 After the exercise, make all groups go back to the plenary'''
*Ask the spokesperson of each group to present their analysis (5 minutes per group, depending on the number of groups).
*Facilitate a plenary discussion to connect insights to real-world practices. Ask participants about their own experiences, (e.g. related real life examples they want to share them with the group). This part can be very interesting and insightful for participants, since it connects the exercise to real world practice, so it is good to keep time and energy for it. To prompt the discussion you can make use of the following questions:
*How did you experience the exercise?
*Did your view change?
*Do you see any similarities in real life experiences?
*Were you surprised by any particular point that was raised during the discussions?
</div>
Introduce the technique of mind-mapping stating why it is useful and how you are going to use it in the session. Mind-mapping is combined with a presentation of a case extracted from the irecs modules Gene editing: Ethics issues ([https://classroom.eneri.eu/node/308 <u><span lang="EN-US">A Case Of Gene Editing In Human Embryos Eneri</span></u>]<u><span lang="EN-US">)</span></u>. You can use the information below to guide your participants:<div>
'''3.1 Mind-mapping: explain what it is and why is it useful'''
</div><div>
''Mind-mapping: A brainstorming technique to visually organize information in groups and subgroups''
</div><div>
*''Encourages lateral thinking, pushing to explore and investigate a topic from different angles''
*''Organizing thoughts and concepts and identifying knowledge gaps''
*''Reflecting while creating, allowing for an informal and comfortable space for reflexivity''
''Allows to use it in combination with a case, as we will do today!''
'''3.2 Explain and provide the instructions for the exercise.'''
It is important that you do that before the presentation of the case, so participants can focus on one thing at a time. Before showing the case, you should provide the following instructions - it is better if the instructions are in a slide:
*''First - division in subgroups, provision of jamboard/whiteboard''
*''Second - Screening of the case''
*''Third - Go to the Jamboard/whiteboard!''
*''Step 1 – assign a spokesperson in your group!''
*''Step 2 – 5 min. Individual reflection - write single words related to the case on the jamboard. Do this step in silence. What are the words that come to your mind after hearing and watching this case?''
*''Step 3 – 10 min. Start talking as a group. Organise the small concepts in big groups.''
*''Step 4 – 10 min. Refine each category into smaller subgroups.''
*''Step 5 – 15 min. Back to plenary, discussion and reporting back.''
</div><div><div>
<u>Trainer tip</u>: Prepare the jamboards/physical boards and some sticky notes of various colors previously, and have the instructions always available for participants, so they can do their exercise autonomously. In step 2, you can decide if you want to give categories (such as: ''as: '''Benefits, Harms, Principles, Responsibilities''''') or if you want to keep the decision of the categories to participants.
</div><div>
'''3.3 Present the case, using the irecs video on the CRISPR-Cas9 case of Lulu and Nana.'''
You can find it here: [https://classroom.eneri.eu/node/308 <u>A Case Of Gene Editing In Human Embryos Eneri</u>] - screening the video makes the session more interactive. If you cannot screen it, you can prepare a slide and read the text outloud.
</div><div>
'''3.4 After the video, divide the group in smaller subgroups and start the exercise of mind-mapping:'''
*Divide participants into subgroups (4-5 members). Provide each group with a white board/digital board and some sticky notes of various colors.
*Remind participants to assign a spokesperson in each group before they start the exercise! This is an important step!
*Always keep the instructions (in the previous section) on the screen.
*Walk around the subgroups (or jump from room to room if you are providing the training online) to make sure that they are following the steps. You can spark conversation by using the following example questions in case some groups are quiet:
*What are the main ethical concerns related to this case?
*What potential benefits could result from this technology?
*What potential harms might arise from using this technology? Why?
*What principles (e.g., justice, autonomy) are most relevant to this case?
*How do these issues appear in practice? What is an action that can arise of those?
</div><div></div><div>
<u>Trainer tip</u>: Keep track of time. You can have small breaks and check in with each subgroup while jumping from step to step to make sure that all the group is following the structure of the exercise.
'''3.5 After the exercise, make all groups go back to the plenary'''
*Ask the spokesperson of each group to present their analysis (5 minutes per group, depending on the number of groups).
*Facilitate a plenary discussion to connect insights to real-world practices. Ask participants about their own experiences, (e.g. related real life examples they want to share them with the group). This part can be very interesting and insightful for participants, since it connects the exercise to real world practice, so it is good to keep time and energy for it. To prompt the discussion you can make use of the following questions
*How did you experience the exercise?
*Did your view change?
*Do you see any similarities in real life experiences?
*Were you surprised by any particular point that was raised during the discussions?
</div></div>
Discuss the main concepts related to biobanking. To build your presentation you can use the content of the [https://classroom.eneri.eu/node/250 irecs modules,] which will provide you with videos and examples, and integrate those in a few PowerPoint slides.
Below are two slides on "Biobanking" and "Sharing of Biological Samples and Data" that can serve as examples.
'''Slide 1: Biobanking'''
[[File:Appendix A irecs slide 1.png|center|thumb|600x600px|Example Slide 1: Biobanking]]Additional notes to slide 1: Present an overview of the definition of a biobank and the types of biobanks and samples. Below are key concepts and resources to support your presentation.
*[https://classroom.eneri.eu/node/251 '''What is a biobank?'''] – To engage the audience you can invite one of the trainees to share what they think a biobank is. Explain key concepts such as ''human biobanks, biological samples, health-related data, autonomy and dignity of donors and their fundamental rights.'' Resources for information about those concepts: [https://classroom.eneri.eu/node/251 What Is A Biobank?]
*[https://classroom.eneri.eu/node/254 '''Types of biobanks and their uses'''] <br />Explain key concepts such as ''population based, disease specific and virtual biobanks''. Resources for information about those concepts: [https://classroom.eneri.eu/node/254 Types Of Biobanks And Their Uses]
*[https://classroom.eneri.eu/node/255 '''Types of biological samples'''] <br />Explain key concepts such as: ''blood, tissues, saliva, DNA, RNA, urine, CFS, cell lines, plasma and serum and fecal samples.'' Resources for information about those concepts: [https://classroom.eneri.eu/node/255 Types Of Biological Samples]
'''Slide 2: Sharing Of Biological Samples and Data'''
[[File:Appendix A slide 2 irecs.png|center|thumb|600x600px|Example slide 2: Sharing of biological samples and data]]
<div>
Additional notes to slide 2: Background information about this topic can be found in the irecs e-module [https://classroom.eneri.eu/node/258 Sharing of Biological Samples & Data]. To interact on this topic with the trainees, the quiz from the e-module can be completed in plenary. Below you will find the questions from the quiz. The quiz can be done digitally or in the lecture room, where trainees can indicate their answers by raising their hands.
Before you show the right answer, you can stimulate the conversation by asking open questions: ''Can you tell me more about your choice? Or:'' ''No one answered option (A/B/C/D), could you explain why you didn’t choose that option?''
<u>Quiz Questions</u>
(Retrieved from [https://classroom.eneri.eu/node/258 Sharing of Biological Samples & Data)]
</div><div>
'''1. What is a primary consideration when sharing biological samples between biobanks?'''
</div><div>
A. Biobank location
B. Sample quantity
C. Sample age
D. Regulatory compliance
</div><div>
'''2. Why is data harmonisation important when sharing data between biobanks? Select all that apply.'''
A. Speed of data transfer
B. Exclusive ownership rights
C. Data encryption methods
D. Harmonisation of consent processes
</div><div>
'''3. What is a key ethical and legal consideration when sharing data internationally between biobanks?'''
A. To economise on the costs of data sharing
B. To enable the seamless integration and analysis of datasets from diverse sources
C. To ensure that information collected follows standardised formats
D. To allow staff from different biobanks to develop good relations
</div>
Discuss the main concepts related to biobanking. To build your presentation you can use the content of the [https://classroom.eneri.eu/node/250 irecs modules,] which will provide you with videos and examples, and integrate those in a few PowerPoint slides.
Below are two slides on "Biobanking" and "Sharing of Biological Samples and Data" that can serve as examples.
'''Slide 1: Biobanking'''
[[File:N1.png|center|frameless|400x400px]]
Additional notes to slide 1: Present an overview of the definition of a biobank and the types of biobanks and samples. Below are key concepts and resources to support your presentation.
*[https://classroom.eneri.eu/node/251 '''What is a biobank?'''] – To engage the audience you can invite one of the trainees to share what they think a biobank is. Explain key concepts such as ''human biobanks, biological samples, health-related data, autonomy and dignity of donors and their fundamental rights.'' Resources for information about those concepts: [https://classroom.eneri.eu/node/251 What Is A Biobank?]
*[https://classroom.eneri.eu/node/254 '''Types of biobanks and their uses'''] Explain key concepts such as ''population based, disease specific and virtual biobanks''. Resources for information about those concepts: [https://classroom.eneri.eu/node/254 Types Of Biobanks And Their Uses]
*[https://classroom.eneri.eu/node/255 '''Types of biological samples'''] Explain key concepts such as: ''blood, tissues, saliva, DNA, RNA, urine, CFS, cell lines, plasma and serum and fecal samples.'' Resources for information about those concepts: [https://classroom.eneri.eu/node/255 Types Of Biological Samples]
'''Slide 2: Sharing Of Biological Samples and Data'''
[[File:N2.png|center|frameless|400x400px]]
<div>
Additional notes to slide 2: Background information about this topic can be found in the irecs e-module [https://classroom.eneri.eu/node/258 Sharing of Biological Samples & Data]. To interact on this topic with the trainees, the quiz from the e-module can be completed in plenary. Below you will find the questions from the quiz. The quiz can be done digitally or in the lecture room, where trainees can indicate their answers by raising their hands.
Before you show the right answer, you can stimulate the conversation by asking open questions: ''Can you tell me more about your choice? Or:'' ''No one answered option (A/B/C/D), could you explain why you didn’t choose that option?''
<u>Quiz Questions</u>
(Retrieved from [https://classroom.eneri.eu/node/258 Sharing of Biological Samples & Data)]
</div><div>
'''1. What is a primary consideration when sharing biological samples between biobanks?'''
</div><div>
A. Biobank location
B. Sample quantity
C. Sample age
D. Regulatory compliance
</div><div>
'''2. Why is data harmonisation important when sharing data between biobanks? Select all that apply.'''
A. Speed of data transfer
B. Exclusive ownership rights
C. Data encryption methods
D. Harmonisation of consent processes
</div><div>
'''3. What is a key ethical and legal consideration when sharing data internationally between biobanks?'''
A. To economise on the costs of data sharing
B. To enable the seamless integration and analysis of datasets from diverse sources
C. To ensure that information collected follows standardised formats
D. To allow staff from different biobanks to develop good relations
</div>
AI ethics is a pressing global concern. Some view AI ethics as a subset of general technology ethics, whilst others argue for its distinct nature. For instance, AI-driven automation raises concerns about unemployment which aligns with fears expressed over past technological advancements. On the other hand, what distinguishes AI ethics from general technology ethics is the demand for regulation that goes beyond previous demand, in particular dedicated ethics committees and impact assessments. The scale of AI's deployment also contributes to the heightened global focus on its ethical implications. Addressing AI ethics challenges is crucial for responsible AI development.
Thanks to Prof. Bernd Stahl and Dr Kate Chatfield for comments on the script. +
