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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'''''Target audience:''''' ''Bachelor and master students, doctoral students and early career researchers''
The [https://www.path2integrity.eu/ Path2Integrity] project introduces educators to innovative teaching methods that will take topics in Research Integrity and Ethics. The project provides introductory videos and information on the teaching methodology used, discussing research integrity and its significance. The easy to use and innovative materials can be found in the [https://www.path2integrity.eu/ri-materials Path2Integrity Training Programme] section. +
The goal of [https://h2020integrity.eu/ INTEGRITY] is to empower students and early career researchers. Rather than focusing on compliance, the project's approach is to develop the capacity of participants to identify, consider, and address integrity concerns in research procedures. +
The goal of [https://h2020integrity.eu/ INTEGRITY] is to empower students and early career researchers. Rather than focusing on compliance, the project's approach is to develop the capacity of participants to identify, consider, and address integrity concerns in research procedures. +
'''''Target audience:''''' ''Bachelor and master students, doctoral students and early career researchers''
The [https://www.path2integrity.eu/ Path2Integrity] project introduces educators to innovative teaching methods that will take topics in Research Integrity and Ethics. The project provides introductory videos and information on the teaching methodology used, discussing research integrity and its significance. The easy to use and innovative materials can be found in the [https://www.path2integrity.eu/ri-materials Path2Integrity Training Programme] section. +
'''''Target audience:''' Bachelor and master students, doctoral students and early career researchers.''
The [https://www.academicintegrity.eu/wp/bridge/ BRIDGE project] provides [https://www.academicintegrity.eu/wp/bridge-modules-2/ training modules] and [https://www.academicintegrity.eu/wp/vignettes_interactive/ vignettes] that can be inserted into research ethics and integrity courses. +
'''''Target audience''': Bachelor and master students, doctoral students and early-career researchers.''
The RID-SSISS training aims to help beginner and more experienced researchers develop their research ethics competencies in HE institutions. A CSCL (Computer-Supported Collaborative Learning) ethics resource was designed that utilised cases, collaboration, and structural scaffolding. This resource provides learners with opportunities to gradually develop research ethics competencies, guiding them through three levels. The [https://en.researchethicscompass.net/ Foundation level] focuses on developing (but also helping learners to recall) central concepts of RE/RI, primarily suitable for bachelor’s, master’s, and doctoral students but also usable with academic staff and researchers. During the Foundation level training, participants learn to guide their own REI practices and behaviour. The RID-SSISS training also provides resources for ECRs and junior academics. This material aims to develop RE/RI competencies by supporting ethical analysis competencies as a step towards increased agency in research ethics and integrity. Ethical analysis involves the following steps: identify ethical issues by determining which ethical principle might be at stake; and utilise the ethical analysis steps to provide solutions to ethical dilemmas. In addition to the foundational level, the project developed training materials for ECRs and junior academics ([https://www.researchethicstraining.net/ advanced level]). +
'''''Target Audience:''' undergraduate and graduate students, early career researchers, prospective research integrity trainers.''
The [[Instruction:A0dd2e82-52e7-4030-a396-54525630e75c|Modified Dilemma Game]] developed by the [[Guide:Bbe860a3-56a9-45f7-b787-031689729e52|VIRT2UE]] project presents a modified version of the [https://www.eur.nl/over-de-eur/beleid-en-reglementen/integriteit/wetenschappelijke-integriteit/dilemma-game#:~:text=Over%20de%20Dilemma%20Game%20app,professionalisme%20in%20onderzoek%20te%20stimuleren. Dilemma Game] developed by Erasmus University Rotterdam. This exercise supports participants in identifying research integrity principles, virtues and questionable research practices in a hypothetical case. It provides a framework to consider, choose and defend alternative courses of action regarding realistic research integrity dilemmas. +
'''''Target Audience:''' undergraduate and graduate students, early career researchers, prospective research integrity trainers.''
The [[Instruction:A0dd2e82-52e7-4030-a396-54525630e75c|Modified Dilemma Game]] developed by the [[Guide:Bbe860a3-56a9-45f7-b787-031689729e52|VIRT2UE]] project presents a modified version of the [https://www.eur.nl/over-de-eur/beleid-en-reglementen/integriteit/wetenschappelijke-integriteit/dilemma-game#:~:text=Over%20de%20Dilemma%20Game%20app,professionalisme%20in%20onderzoek%20te%20stimuleren. Dilemma Game] developed by Erasmus University Rotterdam. This exercise supports participants in identifying research integrity principles, virtues and questionable research practices in a hypothetical case. It provides a framework to consider, choose and defend alternative courses of action regarding realistic research integrity dilemmas. +
'''''Target audience:''' doctoral students and early career researches, senior researchers, and RE/RI experts''
The [[Guide:Bbe860a3-56a9-45f7-b787-031689729e52|VIRT2UE]] project developed a training module introducing [[Instruction:D3ee617b-5d9b-4c47-a015-030b0354c9d2|supervision and mentorship practices]]. This module highlights the relevance of supervision, mentoring, and role-modelling in research environments and provides definitions of roles and their corresponding responsibilities. +
'''''Target audience:''' doctoral students and early career researches, senior researchers, and RE/RI experts''
The [[Guide:Bbe860a3-56a9-45f7-b787-031689729e52|VIRT2UE]] project developed a training module introducing [[Instruction:D3ee617b-5d9b-4c47-a015-030b0354c9d2|supervision and mentorship practices]]. This module highlights the relevance of supervision, mentoring, and role-modelling in research environments and provides definitions of roles and their corresponding responsibilities. +
[[File:People discussing a contract.jpg|center|frameless|600x600px]]
Let’s find out more about the proposed study. While watching the next video, imagine that you are a member of an ethics review committee and your role is to make an assessment about whether or not to approve the study, to ask for changes to be made / further information, or to disallow the study. Make a note of any points or questions that arise for you.
[[File:Research_ethics_committee_members_discuss_the_proposal.mp4|600px|centre]]
====Video Transcript====
The research proposal
Over the past 7 years, a multinational group of scientists have been investigating the potential use of hematopoietic stem cell gene therapy as a treatment for Hunter syndrome. Hematopoietic stem cells (HSCs), also known as blood stem cells, are immature cells in the bone marrow that can develop into all types of blood cells. They have two key characteristics:
#Self-renewal. HSCs can divide and maintain themselves over long periods of time.
#Multipotency. HSCs can generate daughter cells that can differentiate into all blood cell types.
Pre-clinical studies undertaken in rodents have successfully demonstrated the potential of the HSC gene therapy to correct Hunter syndrome in the body and normalise brain pathology. Rodents with the syndrome, treated with the HSC gene therapy, showed dramatic improvements in their condition.
Now the same research group aims to test the approach in humans. This will be the first time it has been tested in humans. It is anticipated that the treatment via genetic manipulation of the patients’ own cells will result in the delivery of increased amounts of the IDS enzyme. As well as clinical efficacy, the study aims to evaluate the HSC gene therapy’s safety and tolerability, and pharmacodynamic effects.
The gene therapy involves collection of HSCs from the patients and inserting a working copy of the defective gene into their HSCs using a lentiviral gene therapy vector. The modified HSCs will then be infused back into the patient to engraft in the bone marrow. If engraftment of modified HSCs in the bone marrow is successful, these cells start to produce daughter blood cells. The daughter blood cells will contain a ''working copy of the IDS'' gene and the IDS enzyme will be distributed throughout the body, including the brain.
The study aims to recruit up to ten patients diagnosed with severe Hunter syndrome, aged between 3 months and 24 months at time of enrolment, and who have not yet shown developmental decline.
The treatment process will occur in 3 stages:
#Stem cell collection.
#Conditioning to prepare the bone marrow using chemotherapy.
#Infusion of gene-modified cells.
The study duration will be 24 months and the young patients will be checked at regular intervals during this period.
====The Discussion====
There may be opposing views on the research ethics committee about whether this study can be approved. It is certainly a proposal that demands careful ethical scrutiny. In the audio below you will hear from some REC members who discuss some of the issues that need to be considered. Check to see whether they address all of the points or queries that you noted.
[[File:Human gene editing REC discussion image.jpg|center|frameless|600x600px]]
====Discussion Transcript====
Research ethics committee discuss the proposal
REC member 1
The thing the concerns me most about this proposal is that it will involve very young and incredibly vulnerable children. They can’t consent to their participation, so that responsibility lies with their parents / legal guardians.
REC member 2
Don’t you think the parents or guardians are in the best position to decide what is in the best interests of their children?
REC member 1
I think the parents might feel pressure to consent to participation because they believe the study offers their child the best chance of recovery and that, by participating in this sort of study, their child will get better medical care and attention.
REC member 3
And the parents are liable to feelings of guilt either way, whether they consent or not. If they don’t consent, then their child will likely die during their teens. If they do consent, and things go wrong, they might feel responsible for making things worse.
REC member 4
I believe we have a moral duty to pursue research like this. There are more than 7,000 rare genetic diseases that we know of and about three-quarters of these affect children. If improvements are to be made in the care and treatment of these children, research is essential.
REC member 2
I can see the need for the research, but I wonder why the children have to be so young. Can’t the therapy be tried in adults or older children first?
REC member 1
I guess that’s because the study must be undertaken before any serious decline occurs, and with severe Hunter syndrome, that is only the case for the very young. Plus, the earlier the treatment occurs, the less damage that can be done. The ideal would be to stop the disease before any damage.
REC member 3
We must remember that gene editing is still highly experimental, so there might be a number of technical risks, and some of these risks might not even be known. This means that the children could suffer from serious consequences if the procedure fails or even if the procedure is successful. The parents will need to be fully informed about both the technology and the risks. There’s a chance that the treatment might make their child suffer even more than they would have done.
REC member 2
Yes, that’s true. What about the risks of off-target effects, or on-target effects, immunogenicity or genetic mosaicism? If we don’t know the precise risks, how can we decide whether the potential benefits outweigh the risk of harms to the children?
REC member 4
I think we can feel somewhat reassured by the fact that this is the same group that has undertaken the earlier testing in animals. They have developed and perfected the technique for this gene therapy, and they are confident that they are now in the position to move to testing in humans.
REC member 1
I agree. That does help to provide some reassurance, but there’s no way that all risks can be avoided. I would like to know what steps are being taken to minimise those risks.
REC member 4
We also need to consider the harm the potential for harm associated with the treatment process itself. Both stem cell collection and chemotherapy involve risks. Chemotherapy for bone marrow conditioning can lead to all of the well-known side effects like hair loss, nausea and vomiting, fatigue, and a compromised immune system. Participating in the trial will inevitably increase suffering in the short term.
'''Did the committee raise all of your concerns? In the next step we touch on some other points, but first, we ask you to think about balancing potential harms and benefits'''
Now that you have a blank Initiative for your project, it's time to add some information! In order to save your initiative page, you need to add at least 3 things: a '''Title''', an '''Image''', and a '''Link.'''
[[File:Initiative Prerequsities.png|center|frameless|600x600px]]
'''Title''' - This should be the title of your project. The title you enter will be used to link to resources across the Embassy platform, so it would be wise to use the shortest title possible!
'''Image''' - The image which will display next to your project name across the Embassy. If your project has a logo or icon, you should use this! Accepted filetypes include jpg/jpeg, png, svg and xml files with a maximum size of 120mb.
'''Link''' - Here you can include a link to your project website, or to a suitable alternative like the repository for your project outputs. This must take the form of a valid URL.
You can also add a description of your project to your initiative page in the "What is this about?" box, but keep it short - the word limit on this section is 75 words. +
<div>
<span lang="EN-GB">Improving reproducibility is a multifaceted challenge requiring both behavioural and cultural change.</span> <span lang="EN-US">The adoption of reproducibility practices has been sparked and embraced by the Open Science movement. However, a lot of researchers are not fully aware of the implications of reproducibility and how Open Science and reproducibility are connected and intertwined (Haven et al., 2022). To increase awareness and change research practices several steps should be taken (Nosek, 2019). First, the infrastructure for the desired behaviour should be provided to make it possible. Second, the user interface and experience of the infrastructure should be improved to make the behaviour easy. Third, communities of practice should be fostered to make the behaviour visible and so increasingly normative. Fourth, incentives to enact the behaviour should be provided to make it rewarding. Last, policies should be enacted to make the behaviour required (Nosek, 2019). To further this work, we sought to explore the future of reproducibility for different stakeholders and question what should be the next steps for reproducibility and how diverse epistemic contexts can adopt reproducibility in different forms. In this deliverable, we aim to add nuance to the reproducibility debate through flexible investigation of diverse epistemic contexts (researchers from the field of machine learning and researchers working with qualitative methods), exploring the future of reproducibility through the lens of diverse research stakeholders – researchers, funders, and publishers.</span>
</div><div>
<span lang="EN-US">In this context, we look to the future of reproducibility by exploring the preferred scenarios for multiple stakeholders, including how these scenarios can be realized. We reflect on the steps that are necessary for adherence to reproducibility-enabling practices and what different epistemic contexts need to make reproducibility a priority. Lastly, we reflect on what are the new problems that we may face when aiming to improve reproducibility. We believe exploring the possible futures for reproducibility is essential to discover the next steps for different members of the scientific community to take to realize the preferred future and the actions to avoid steering away from the dystopian futures.</span>
</div><div>
<span lang="EN-US">We aim to highlight the essential role of institutions, funders and publishers in this endeavor to make reproducibility a priority by recognizing, rewarding, evaluating and monitoring reproducibility. Ultimately, we hope to steer and move forward the debate on reproducibility in the research community by</span> <span lang="EN-GB">addressing a set of core research questions related to how key stakeholders in the academic community envision the way in which matters of reproducibility should be addressed in the future. More specifically, it asks representatives from research funders, scholarly publishers, and researchers from diverse disciplinary backgrounds:</span>
</div><div>
<span lang="EN-GB">1. What are the preferred futures of reproducibility?</span>
</div><div>
<span lang="EN-GB">2. What are the enablers and barriers on the way to the preferred future or reproducibility more generally?</span>
</div><div>
Below we present the results of our study below.
</div>
For more information, please refer to the full paper: [https://osf.io/preprints/metaarxiv/gx9jq_v1 MetaArXiv Preprints - How to get there from here? Barriers and enablers on the road towards reproducibility in research].
The first type of resource that you can add to the Embassy are guidelines - systematic documents which provide advice or outline recommended practices to help individuals or organizations make informed decisions consistently and responsibly.
Guidelines which are relevant for adding to the Embassy should relate in some way to promoting integrity, transparency, and quality in research. They might offer best practices for handling data management, ethical approval processes, authorship issues, and other research integrity and ethics concerns.
To add a guideline, you need:
*A Title
*Some text in the "What is this about?" box
*Some selections in the "For whom is this important?" box
*A URL to the guideline in the "Link" box
For an example of a guideline, take a look at [[Resource:86081665-70a2-47b2-869e-d3ee84a92e9f|the TRUST code.]]
For further inspiration, look at the other [https://embassy.science/wiki/Special:BrowseData/Resource?_search_Resource_Type%5B0%5D=Guidelines Guidelines]. +
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> +
[[File:Man thinking .png|center|frameless|600x600px]]
Philosopher Immanuel Kant maintained that a priori knowledge is independent of experience. He contrasted this with a posteriori knowledge, which has its sources in experience and observation. In life, most knowledge is of the a posteriori form; it is rooted in experience and observation.
Watch this video to find out why philosophers think there might be a problem with this.
'''The Problem Of Induction'''
Understanding how we construct knowledge helps us to take a critical standpoint and to exercise caution when making assumptions about proof. As well as the above evidence-proof issue, it is also important to acknowledge the impact of the researcher on the creation of knowledge. +
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. +
