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From The Embassy of Good Science
Describe the actions the user should take to experience the material (including preparation and follow up if any). Write in an active way.
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Adomaitis, Laurynas, Alexei Grinbaum, and Dominic Lenzi. ‘D2.2 Identification and Specification of
Potential Ethical Issues and Impacts and Analysis of Ethical Issues’. Zenodo, 30 June 2022.
https://doi.org/10.5281/zenodo.7619852.
Aucouturier, E., Grinbaum, A., et al. (2023) Recommendations to address ethical challenges from research in new technologies. Available at: https://irp.cdn-website.com/5f961f00/files/uploaded/Deliverable_2.2.pdf
Chasid, Alon. ‘Imaginative Immersion, Regulation, and Doxastic Mediation’, 2021.
https://philarchive.org/rec/CHAIIR-2.
Langland-Hassan, Peter. Explaining Imagination. Oxford: Oxford University Press, 2020.
Liao, Shen-yi. ‘Immersion Is Attention / Becoming Immersed’, manuscript.
https://philarchive.org/rec/LIAIIA.
Li, Yang, Jin Huang, Feng Tian, Hong-An Wang, and Guo-Zhong Dai. ‘Gesture Interaction in Virtual
Reality’. Virtual Reality & Intelligent Hardware 1, no. 1 (1 February 2019): 84–112.
https://doi.org/10.3724/SP.J.2096-5796.2018.0006.
Schellenberg, Susanna. ‘Belief and Desire in Imagination and Immersion’. The Journal of Philosophy
110, no. 9 (2013): 497–517.
Suzuki, Keisuke, Alberto Mariola, David J. Schwartzman, and Anil K. Seth. ‘Using Extended Reality
to Study the Experience of Presence’. Current Topics in Behavioral Neurosciences, 3 January 2023.
https://doi.org/10.1007/7854_2022_401.
This case is inspired by SHARESPACE project: (https://cordis.europa.eu/project/id/101092889)
The IEEE Global Initiative on Ethics of Extended Reality:
IEEE SA - The IEEE Global Initiative on Ethics of Extended Reality
== EU Research projects involving XR: ==
- Empower Refugee Women through XR supported Language learning (XRWomen):
https://www.motion-digital.eu/post/project-xr-women
- Volumetric 3D Teachers in Educational reality: https://vol3dedu.eu/
- REalisation of Virtual rEality LearnING Environments (VRLEs) for Higher Education
(REVEALING): https://revealing-project.eu/
- Extended Reality For DisasteR management And Media plAnning (xR4DRAMA):
https://xr4drama.eu/_project_/
- Augmented Reality Instructional Design for Language Learning – ARIDLL project:
https://aridll.eu/
BBMRI-ERIC Common Service ELSI https://www.bbmri-eric.eu/services/common-service-elsi/
CIOMS (2016) International ethical guidelines for health-related research involving humans https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf
Council of Europe – Biobanks https://www.coe.int/en/web/bioethics/biobanks/-/asset_publisher/lcb5Z6eMEwYb/content/research-on-biological-materials-of-human-origin-new-recommendations-to-member-stat-1
Council of Europe (2016) Recommendation CM/Rec(2016)6 of the Committee of Ministers to member States on research on biological materials of human origin https://search.coe.int/cm/Pages/result_details.aspx?ObjectId=090000168064e8ff
European Commission (2018) Data protection in the EU https://commission.europa.eu/law/law-topic/data-protection/data-protection-eu_en
ISBER (International Society for Biological and Environmental Repositories) (2024) Best practices for repositories https://www.isber.org/page/BPR
NHS Health Research Authority (2021) Research tissue banks and research databases
Last updated on 12 Oct 2021
https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/research-tissue-banks-and-research-databases/
NIH (2024) Genomic Data Sharing (GDS) Policy https://sharing.nih.gov/genomic-data-sharing-policy
OECD Guidelines for Human Biobanks and Genetic Research Databases (HBGRDs)
https://www.bbmri-eric.eu/library/oecd-guidelines-for-human-biobanks-and-genetic-research-databases-hbgrds-2009/?
World Medical Association (2016) Declaration of Tapei on ethical considerations regarding health databases and biobanks
https://www.wma.net/policies-post/wma-declaration-of-taipei-on-ethical-considerations-regarding-health-databases-and-biobanks/ +
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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:
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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]
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'''Further reading and references'''
Abbott, K. (2014). Social Justice. In: Michalos, A.C. (eds) Encyclopedia of Quality of Life and Well-Being Research. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-0753-5_2772
Bell, L. A. (2007). Theoretical foundation for social justice education. In M. Adams, L. A. Bell, & P. Griffin (Eds.), Teaching for diversity and social justice (2nd ed.). New York: Routledge.
Brady, E., Nielsen, M.W., Andersen, J.P. et al. Lack of consideration of sex and gender in COVID-19 clinical studies. Nat Commun 12, 4015 (2021). https://doi.org/10.1038/s41467-021-24265-8
CIHR, NSERC, SSHRC (2022) Tri-council policy statement: ethical conduct for research involving humans, December 2022. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. https://ethics.gc.ca/eng/documents/tcps2-2022-en.pdf. Accessed 21 Jan 2024
Coleman, C. H. (2009). Vulnerability as a regulatory category in human subject research. Journal of Law, Medicine & Ethics, 37(1), 12-18.
Council for International Organizations of Medical Sciences (CIOMS) (2016) International Ethical Guidelines for Biomedical Research Involving Human Subjects. Available at: https://cioms.ch/publications/product/international-ethical-guidelines-for-health-related-research-involving-humans/
Gordon BG. Vulnerability in Research: Basic Ethical Concepts and General Approach to Review. Ochsner J. 2020 Spring;20(1):34-38. doi: 10.31486/toj.19.0079. PMID: 32284680; PMCID: PMC7122263.
Luna, F. (2019). Elucidating the Concept of Vulnerability: Layers Not Labels. International Journal of Feminist Approaches to Bioethics, 2(1), 121–139. http://www.jstor.org/stable/40339200
WMA (2013) WMA Declaration of Helsinki: ethical principles for medical research involving human subjects. World Medical Association. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/.
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'''Video Transcript'''
When researchers work on VR applications or VR headsets, devices or techniques, they should always think about the effects that these devices will have on the user. This is not very new. We typically think about how this or that kind of software will be used. Here, the devices and techniques may have an effect that goes quite far. First, because there is subliminal influence, because these devices don't necessarily present things to the consciousness of the user but can go beyond. Second because these devices and techniques will be used in sectors of human life, which very often influence humans profoundly deeply.
Let me take a couple of examples. One is education. Another one is healthcare. When you use a VR device for education, of course you should ask, well, what kind of human are we creating that way?
What knowledge, what skills are we creating that way? If we teach a human to swim using a virtual reality device, will that human be able to swim in the real life? If we teach a professional, let's say first aid professional, to deliver first aid through some simulation in extended reality, maybe for the fireman or for medical, healthcare professionals, will they be able to do this in real life? If we use a VR device to study how to fix nuclear explosions, and if, God forbid, there is a nuclear explosion, will we be able to use our virtual skills in the material world?
These deep questions are not just pure abstract things, let's figure out later. The researchers should think about these things and try to develop solutions by design. This is what we call, there is an expression favoured by the European Commission, ‘[https://ec.europa.eu/info/funding-tenders/opportunities/docs/2021-2027/horizon/guidance/ethics-by-design-and-ethics-of-use-approaches-for-artificial-intelligence_he_en.pdf ethics by design]’. Well, ethics by design doesn't mean that your device will be ethical by design, of course not, but it means that as you're designing a headset or techniques and applications, you're thinking about possible ethical issues that may arise during use, later on when your device or technique will be deployed in the real world, and you're trying to put some checks and balances by design at an early stage.
So, depending on the sector where your technique or device will be used, depending on the kind of software, is there machine learning or not? Is it subliminal or not? Depending on the type of the headset or the hardware, does it use a brain computer interface or not? Is it just a screen or maybe much more than just a screen? So, depending on all these things, there should be questions asked by the designers at early stages, and at least some, I would say, solutions or maybe some first ideas of solutions that are developed in the code, in the design of the hardware at an early stage, so that when ethical questions arise later, there will be more traceability, more checks, more metrics more evaluation in order for us to be able later to deal with these kinds of questions, both at the individual level and at the societal level.
When research is prioritized during a pandemic, research participants in ongoing studies must not be left worse off than before they joined their original study +
Arild Johan Jansen's lecture covers the responsible use of open data. He highlights the need to assess data sources and quality, emphasises transparency in ethical data use, and addresses privacy and security requirements.
'''Watch the lecture and then answer the questions.'''
'''Further reading:'''
Data sharing and the future of science. (2018). Nature Communications, 9(1), 2817. https://doi.org/10.1038/s41467-018-05227-z +
Amoakoh-Coleman, M., Vieira, D. & Abugri, J. Ethical considerations for biobanking and use of genomics data in Africa: a narrative review. BMC Med Ethics 24, 108 (2023). https://doi.org/10.1186/s12910-023-00985-y
Annaratone L, De Palma G, Bonizzi G, Sapino A, Botti G, Berrino E, Mannelli C, Arcella P, Di Martino S, Steffan A, Daidone MG, Canzonieri V, Parodi B, Paradiso AV, Barberis M, Marchiò C; Alleanza Contro il Cancro (ACC) Pathology and Biobanking Working Group (2021) Basic principles of biobanking: from biological samples to precision medicine for patients. Virchows Arch. 2021 Aug;479(2):233-246. doi: 10.1007/s00428-021-03151-0. Epub 2021 Jul 13. PMID: 34255145; PMCID: PMC8275637.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8275637/
Ashcroft JW, Macpherson CC (2019) The complex ethical landscape of biobanking The Lancet Public Health June 2019 https://doi.org/10.1016/S2468-2667(19)30081-7
ClloudLIMS (2020) Informed consent: considerations for biobanks March 11 2020 https://cloudlims.com/informed-consent-dynamic-broad-tiered-and-meta-consent-for-biobanking/
Dagher G. (2022) Quality matters: International standards for biobanking. Cell Prolif. 2022 Aug;55(8):e13282. doi: 10.1111/cpr.13282. Epub 2022 Jun 16. PMID: 35709534; PMCID: PMC9357355. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9357355/
Geiger, J., Fuchs, J., Starke, M. et al. GBA/GBN-position on the feedback of incidental findings in biobank-based research: consensus-based workflow for hospital-based biobanks. Eur J Hum Genet 31, 1066–1072 (2023). https://doi.org/10.1038/s41431-023-01299-8
Graham M, Hallowell N, Solberg B The Northern European Returning Results Network, et al. Taking it to the bank: the ethical management of individual findings arising in secondary research. Journal of Medical Ethics 2021;47:689-696.
Healthtalk.org What is biobanking and why is it important? https://healthtalk.org/experiences/biobanking/what-is-biobanking-and-why-is-it-important/
Lieb, W.; Strathmann, E.A.; Röder, C.; Jacobs, G.; Gaede, K.I.; Richter, G.; Illig, T.; Krawczak, M. (2024) Population-Based Biobanking. Genes 2024, 15, 66. https://doi.org/10.3390/genes15010066
Littlejohns, T.J., Holliday, J., Gibson, L.M. et al. The UK Biobank imaging enhancement of 100,000 participants: rationale, data collection, management and future directions. Nat Commun 11, 2624 (2020). https://doi.org/10.1038/s41467-020-15948-9
Mikkelsen, R.B., Gjerris, M., Waldemar, G. et al. Broad consent for biobanks is best – provided it is also deep. BMC Med Ethics 20, 71 (2019). https://doi.org/10.1186/s12910-019-0414-6
Singh S, Cadigan RJ, Moodley K (2022) Challenges to biobanking in LMICs during COVID-19: time to reconceptualise research ethics guidance for pandemics and public health emergencies? Journal of Medical Ethics 2022;48:466-471. https://jme.bmj.com/content/48/7/466
Zhao, Y., Zhang, W. (2018). An International Collaborative Genetic Research Project Conducted in China. In: Schroeder, D., Cook, J., Hirsch, F., Fenet, S., Muthuswamy, V. (eds) Ethics Dumping. SpringerBriefs in Research and Innovation Governance. Springer, Cham. https://doi.org/10.1007/978-3-319-64731-9_9
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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.
What types of personal data can XR platforms and applications potentially collect from users? +
Where research participants depend on research studies for access to medication and services, study modifications during pandemics need to be managed responsibly to ensure that their lives and health are not endangered. +
Try to answer the questions about the case. +
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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%2F3puN6rfFYS&data=05%7C02%7CKChatfield%40uclan.ac.uk%7Cde983f54bcc64d66a02908dcd0b50ccd%7Cebf69982036b4cc4b2027aeb194c5065%7C0%7C0%7C638614723283142461%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=noGJNHMbkeQtmNkEzmf2zx2ua3sxX%2F7ta9F8pmckrSQ%3D&reserved=0 https://forms.office.com/e/3puN6rfFYS]
Thank you! +
During pandemics, studies involving healthy volunteers in which novel compounds are administered to humans or no rescue therapy is available should only be started if space in intensive care units is assured for the needs of healthy volunteers, as well as for all patients in routine care. +
In this lecture, Arild Johan Jansen addresses the ethical considerations of using artificial intelligence (AI) in research. AI is utilised in various stages of the research process, presenting several ethical challenges, including insufficient data, data bias, and others. The lecture concludes by discussing adherence to regulatory frameworks.
'''Watch the lecture and then answer the questions.'''
'''Further reading:'''
Davison, R. M., Chughtai, H., Nielsen, P., Marabelli, M., Iannacci, F., van Offenbeek, M., Tarafdar, M., Trenz, M., Techatassanasoontorn, A. A., Díaz Andrade, A., & Panteli, N. (2024). The ethics of using generative AI for qualitative data analysis. Information Systems Journal, 34(5), 1433–1439. https://doi.org/10.1111/isj.12504 +
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The training program as a whole demands a significant commitment from trainers so it is highly recommended to involve a colleague in the organization and facilitation of the training (especially for the face-to-face sessions). +
After experiencing each exercise, in order to reflect on what would trainees need to do or learn to be able to facilitate the exercises themselves, you can consider asking the following questions:
a. Would you be able to facilitate this exercise yourself?
b. What would you need to know or develop?
c. Do you need any further clarification about any of the steps in the exercise?
d. Is there anything unclear about the goals and procedures of the exercise? +
Practice again (elements and variations of) the exercises supervised by a trainer.
Discuss with your trainers and with the group the possibility to adapt the training materials. +
Encourage trainees to express doubts and questions that might have arisen during the time in between the two face-to-face sessions. Address both theoretical and practical issues and invite them to reflect on how to enable a virtue ethics approach in people’s ways to think about and do research. +
Show the movie fragment. +
Based on the content of the forms you can prepare a list of topics to be discussed during the second face-to-face session. Questions 3, 4, and 5 of the [https://www.dropbox.com/s/1fmppqv189jxlqj/Self%20reflection%20form.pdf?dl=0 self-reflection form] are particularly helpful to look at for this purpose, as they provide information on what worked well, what did not go well, and what requires attention.
You can consider preparing a short PowerPoint listing the input you have collected. This may provide guidance and structure for the discussion. +
