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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Which paradigm are you working in? Look at the descriptions on the end points of each question, and try to work out where you and your research project might fall along each continuum. Are you more of a realist or more of a relativist? Is your approach to knowledge generation more positivist or interpretivist? Do these aspects fit with the methodological stance that you take in your research?
Most people operate somewhere between the extremes. Additionally, it is possible to alter one’s positionality in response to different contexts. For instance, when addressing a research question which requires broad statistics, one might take a more positivist stance;when in-depth inquiry of a qualitative nature is required, one might take a more interpretivist stance. The important point is that we are cognisant of our perspective and its influence upon the knowledge that we create. +
Are you at the start of your project and planning to create research data? Read on to find out how to make it more findable, accessible, interoperable and reusable via the FAIR principles.
====How to GO FAIR – The Three-point FAIRification Framework====
Since its beginning in early 2018, the GO FAIR community has been working towards implementations of the FAIR Guiding Principles. This collective effort has resulted in a three-point framework that formulates the essential steps towards the end goal, a global Internet of FAIR Data and Services where data are Findable, Accessible, Interoperable and Reusable (FAIR) for machines.
The [https://www.go-fair.org/how-to-go-fair/ Three-point FAIRification Framework] developed by the GO FAIR Initiative provides practical “how to” guidance to stakeholders seeking to go FAIR. The framework helps a broad spectrum of stakeholders to see what “going FAIR” means to them in practice, and to immerse themselves in the emerging FAIR landscape.
FAIR self-assessment
In order to assess the FAIRness of a dataset and determine how to enhance its FAIRness, you can use this [https://ardc.edu.au/resource/fair-data-self-assessment-tool/ FAIR Data Self Assessment Tool] developed by the ARDC - Australian Research Data Commons.
Further reading:
OpenAIRE – [https://www.openaire.eu/how-to-make-your-data-fair How to make your data FAIR.] OpenAIRE Guide for Researchers.
[1] GO FAIR. How to GO FAIR. https://www.go-fair.org/how-to-go-fair/ +
Licenses can be applied to any material (e.g., sound, text, image, multimedia, software) where some exploitation or usage rights exist.
==== Open Access Licensing ====
If you want to publish Open Access, you will still own the rights to your work. You control how it can be used and the credit you are given by choosing one of the [https://creativecommons.org/share-your-work/ Creative Commons] licenses. These open licenses are administered independently of any publisher and are internationally recognised. The licenses are applied as a legal code of practice, and can be seen as an addition to the intrinsic copyright applied in each country. Using an open license allows others to continue to build upon your work. There are currently [https://creativecommons.org/licenses/ six types of Creative Commons licenses] available, each with slightly different permissions and requirements. All the licenses require that others using your work in any way must give you credit in the way you request, but not in a way that suggests that you endorse them in their use. There must always be a reference and a link to the original if the work is mentioned or reused.
==== What is a Creative Commons licence? ====
Creative Commons, a global not-for-profit organisation which provides legal tools to promote the sharing and reuse of works of authorship, has produced a number of licences some of which meet the criteria for Open Access. These offer different levels of permission.
Creative Commons offers licences readable at three different levels: legal, machine (the metadata) and human (non-legal descriptions). Creative Commons has a useful tool to help you determine the licence best for you. More restrictive CC licences are unlikely to meet Open Access requirements (e.g. because they impose restrictions on commercial use).
What licence should be applied to the research data?
It depends on what rights protect your research data, if at all.
* If your research data qualifies as a work (literary work such as a journal article or a software), then CC BY 4.0 is usually the best choice. The use of the Share Alike (SA) is also compatible with the Open Access definition and reinforced in Plan S licensing guidance for publications. Non-commercial should be avoided as it is not Open Access compliant. Non-derivative is a tricky issue and should be avoided, especially if you do not know what you are doing. That said, it may not be incompatible with the Open Access definition.
* If your research data is a database or a dataset (unstructured data that do not meet the database definition) usually the best option is a CC0, which waives all your rights in the database.
Keep in mind that CC licences only deal with copyright and copyright related matter. Personal data are not included in CC and are analysed separately.
Further reading:
FOSTER. https://open-science-training-handbook.github.io/Open-Science-Training-Handbook_EN//02OpenScienceBasics/06OpenLicensingAndFileFormats.html
[1] OpenAIRE. Licenses for Research Data. https://www.openaire.eu/how-do-i-license-my-research-data
[2] Think. Check. Submit. (2024). Copyright and Licensing for authors and editors. https://thinkchecksubmit.org/resources/copyright-and-licensing/
Urbina, M. A., Watts, A. J. R., & Reardon, E. E. (2015). Labs should cut plastic waste too. Nature, 528(7583), 479. https://doi.org/10.1038/528479c
Honda, I., Courtney, E., Miller, R., & Moon, A. (2024, August 27). Green Labs Austria: Pioneering sustainability in scientific research. MIT Science Policy Review, 5. [https://sciencepolicyreview.pubpub.org/pub/e4alcpei/release/3 Green Labs Austria: Pioneering sustainability in scientific research · V5] +
Research engages diverse social contexts, values, and forms of knowledge. Ethical reflection, therefore, extends beyond outcomes to questions of who participates in research and decision-making as well as whose knowledge is treated as legitimate. Where research has environmental or climate implications, these questions are particularly important because research may affect shared environments, local practices, and long-term societal and environmental trajectories. This section focuses on participation, pluralism, inclusion and respecting multiple epistemologies as dimensions of responsible research practice, particularly where research affects communities, relies on local knowledge, or informs societal decisions. Participation is meaningful when contributors can influence research questions, the interpretation of findings, or the use of results, rather than being limited to data provision alone +
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An important role for a research ethics committee is to establish what the risks are and assess whether the risks are justified by the study’s objectives. This also involves assessment of the potential benefits of the study and checking of measures that will be employed to minimise the risks.
By now, you should have a good idea of the potential risks and benefits that are associated with this study.
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Most research studies involving humans involve some level of risk, but there must be a realistic potential for benefits to justify the risks. Nevertheless, if the risks (for participants, society, or the environment etc.) are high, it is unlikely that the study will be permitted even when there is a great potential for benefits. In all cases, reliable measures must be put in place to mitigate or minimise any risks. Risks must be minimised, and potential benefits maximised.
While there may appear to be a lot of risks associated with this proposal, most can be minimised or mitigated. What might that involve? Many of the points on the document, The use of XR technologies in research: A checklist for research ethics committees are relevant to risk minimisation and mitigation.
For instance, Section 4, which is devoted to participant wellbeing and non-maleficence, asks about appropriate mitigation measures such as regular breaks during sessions or monitoring of participants for signs of discomfort, and appropriate protocols for managing emotional distress and offering support. These mitigation measures must be reviewed to ensure participant welfare, but also to help assess whether the study is justified. Do you think the potential benefits outweigh the potential risks involved in this proposed project? +
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Consider the following questions to reflect on the potential impact of AI technologies in healthcare on the patient-doctor relationship:
Awareness and Trust:
*Do you think patients may have concerns or reservations about relying on AI-driven insights over traditional doctor-patient interactions?
Communication and Understanding:
*In what ways do you think AI technologies could enhance or hinder communication between patients and healthcare professionals?
Personalisation and Empathy:
*Do you think the integration of AI could impact the empathetic aspects of the patient-doctor relationship? If so, in what ways?
Role of the Healthcare Professional:
*What role do you envision for healthcare professionals in a future where AI technologies play a significant role in diagnosis and treatment?
*How can doctors maintain their essential role as caregivers and decision-makers while working alongside AI systems?
Balancing Technology and Human Touch:
*Reflect on the importance of finding a balance between AI technologies and the human touch in healthcare. How can technology enhance, rather than replace, the human connection between patients and healthcare providers? +
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Work has been conducted in [https://www.nature.com/articles/s41431-023-01299-8 Germany] and the [https://www.bbmri.nl/sites/bbmri/files/Erasmus_MC_Handreiking_Interactieve_pdf_Engels_29_04_2020_V3.pdf Netherlands] to design guidelines for dealing with incidental findings arising from biobank research. Both sets of guidelines emphasise that processes for dealing with incidental findings need to be in place from the design stage of studies.
'''Feedback'''
Researchers working with secondary data collected by biobanks need to be aware of the original conditions of consent given by biobank donors, including whether they have been given the option to be notified of incidental findings and if so, did they opt in or out. Other considerations to take into account are the length of time that has passed since the donation was made, and whether the data has been utilised previously by other researchers.
Notification of findings long after the donation, or by multiple researchers may be unwelcome to the donor. However, any such decisions about communicating incidental findings derived from secondary biobank data should be guided by the conditions of consent under which the original data was contributed. +
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Having worked your way through this case study module, how would you feel if a similar proposal was presented to a REC that you were serving on? Do you feel that you would be able to identify where further information or expertise is required, and to locate and apply relevant policies and guidelines? There are many factors to consider, we have touched on several key issues in this case, you might have identified other issues that you would want an ethics committee to take into account in similar situations.
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In the final part of this module, we consider how we might become more cognisant of our embedded beliefs and assumptions through critical reflection. This in turn can help us to take a critical approach to ethical analysis. To begin with, we ask you to undertake an exercise.
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Our understanding of the world may have as much to do with our minds as with the world.
Write a short description of the image above. What do you notice? What do you think has happened here? Where do you think it might be? Please note any other thoughts that come to mind in relation to the image. +
<blockquote>In Nairobi, an estimated 30,000 sex workers face significant challenges, including social vulnerability and extreme poverty. During the COVID-19 pandemic, the implementation of lockdown measures, while potentially justified in high-income countries, had a devastating impact on this marginalized community. In this short documentary, Nairobi sex workers share their stories about the impact of lockdown on their lives and on their physical and mental health.</blockquote> +
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Do you think you could identify who is vulnerable in research? Take a moment to consider this issue and then click on the feedback tab below.
The most striking commonality across research ethics codes is the suggestion that vulnerability can stem from belonging to a certain group. When vulnerability is mentioned, it is commonly accompanied by examples of the sorts of groups to whom this applies. A problem with the naming of particular groups, even as examples, is the implication that people are to be considered vulnerable simply by virtue of belonging to a certain group. This can render the term unhelpful and patronizing. Nowadays, there is acknowledgement across many codes and guidelines that determining who is vulnerable requires a nuanced approach because vulnerability can stem from a range of factors, for instance, power differentials between researchers and participants, capacity to understand, unrealistic expectations and so on. We need to be careful not to jump to conclusions about who is vulnerable. +
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'''Video Transcript'''
When we talk about virtual reality and extended reality, of course there are a lot of typical ethical questions that we always ask with regard to other types of technologies, questions about data, questions about cybersecurity, questions about control, and so on. I would say maybe one of the most important themes of ethical questioning, not just one question but a whole host of questions, are questions about manipulation.
Why is that? Because when we wear a virtual reality device, it can interact with our brains in ways that are beyond our conscious control. We call it subliminal interactions. They're not always present to our consciousness. Sometimes these devices use brain data, even if they don't, even if they just present a picture in front of our eyes. Still, the way they do it, is not very natural. They do create illusions. They can probably, incite us or manipulate us into doing something.
There is a word to nudge, nudge us into doing something. This can be a good thing. So, maybe they can inform us that we should eat more fruit and vegetables and enjoy the good weather, even if it's raining outside, but we will have an illusion of being happy. This will probably nudge us to some beneficial or nice behaviour. They can also manipulate us into doing things that are not necessarily in our interest.
So, there is good and bad there. It's not always bad manipulation. It can be also beneficial or good nudging. But the very existence of this technology begs the question, who decides? Because this is below our conscious control. Even if you tell the human, ‘Well, this device will probably influence you in some ways. Can you please consent to this?’ Because we want to use the device, we will probably sign the informed consent form and still be manipulated.
Even if you tell the user, ‘You know, there is a possibility of manipulation,’ they will probably not really notice it because that's in the nature of how these devices interact with our brains, below the threshold of consciousness. So, manipulation is a very difficult, rich and really broad family of ethical questions to think about when we think about virtual and extended reality.
Try to answer the questions about the case. +
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This link will take you to a new page;[https://eur01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fforms.office.com%2Fe%2FcimWP1L4tx&data=05%7C02%7CKChatfield%40uclan.ac.uk%7Cde983f54bcc64d66a02908dcd0b50ccd%7Cebf69982036b4cc4b2027aeb194c5065%7C0%7C0%7C638614723283135084%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=mx6LNK14iRC744b7LLnUg8jxZ%2FKLXd%2Blo6I8kmwz%2Bwg%3D&reserved=0 https://forms.office.com/e/cimWP1L4tx]
Thank you! +
Thank you for taking this irecs module!
Your feedback is very valuable to us and will help us to improve future training materials.
We would like to ask for your opinions:
1. To improve the irecs e-learning modules
2. For research purposes to evaluate the outcomes of the irecs project
To this end we have developed a short questionnaire, which will take from 5 to 10 minutes to answer.
Your anonymity is guaranteed;you won’t be asked to share identifying information or any sensitive information. Data will be handled and stored securely and will only be used for the purposes detailed above. You can find the questionnaire by clicking on the link below.
This link will take you to a new page;[https://eur01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fforms.office.com%2Fe%2FK5LH08FyvQ&data=05%7C02%7CKChatfield%40uclan.ac.uk%7Cde983f54bcc64d66a02908dcd0b50ccd%7Cebf69982036b4cc4b2027aeb194c5065%7C0%7C0%7C638614723283127814%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=shLTj7qPsGmGj0JOoPRZV2LhKbl5XOOhAbo7F%2FWzW7s%3D&reserved=0 https://forms.office.com/e/K5LH08FyvQ]
Thank you! +
Thank you for taking this irecs module!
Your feedback is very valuable to us and will help us to improve future training materials.
We would like to ask for your opinions:
1. To improve the irecs e-learning modules
2. For research purposes to evaluate the outcomes of the irecs project
To this end we have developed a short questionnaire, which will take from 5 to 10 minutes to answer.
Your anonymity is guaranteed;you won’t be asked to share identifying information or any sensitive information. Data will be handled and stored securely and will only be used for the purposes detailed above. You can find the questionnaire by clicking on the link below.
This link will take you to a new page: [https://eur01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fforms.office.com%2Fe%2FUsKC9j09Tx&data=05%7C02%7CKChatfield%40uclan.ac.uk%7Cbe3ccf952ee04506e25608dd19dcde06%7Cebf69982036b4cc4b2027aeb194c5065%7C0%7C0%7C638695158651948095%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=P5sNoxm3jW6tLABNV7bNiETR3fHQUG2VODMd3wk3r9E%3D&reserved=0 https://forms.office.com/e/UsKC9j09Tx]
Thank you! +
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The final video in this module is the winning video from the [https://www.globalewerteallianz.ch/en/ FGVA] sponsored rap, dance and music competition held for the TRUST project. "We are the San", from !Khwa ttu Kids is a representation of the values of fairness, respect, care and honesty through song, film and dance. Congratulations to the team at [https://www.khwattu.org/ !Khwa ttu].
If you want to learn more, please visit the bibliography and further reading page for some relevant resources. +
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You can try these questions to see whether your learning from this module addresses the intended learning outcomes. No one else will see your answers. No personal data is collected. +
