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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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. +
Make arrangements for the time and venue for experiencing each exercise and send out invitations to prospective participants (6-12 max.). You do not need to do the 5 exercises in one go or with the same group. You may combine exercises and integrate them in one session (e.g. [https://embassy.science/wiki/Instruction:Ac206152-effd-475b-b8cd-7e5861cb65aa Debate-dialogue] and [https://embassy.science/wiki/Instruction:A0dd2e82-52e7-4030-a396-54525630e75c Dilemma game]).
Make sure to distribute and plan the collection of the required forms (i.e. [https://www.dropbox.com/s/078geogqap548ne/SDA%20sheet%20ver%203%20%281%29.docx?dl=0 Self-declaration] and case reflection form - included in the tips of the [https://embassy.science/wiki/Instruction:747f4d61-3c97-4c4b-acd9-4d69c95f134b Virtues and norms] instructions). +
Varieties of goodness in research - a rotary style exercise (variation to original VIRT2UE exercise)) +
Introduce the exercise, it's objectives and the 'varieties of goodness'. +
In order to gain the VIRT2UE certificate, you need to train 10 researchers in the VIRT2UE approach. The VIRT2UE program consists of three online modules and five participatory exercises. We consider it sufficient if you train 10 researchers in 3 out of the 5 participatory exercises - this would provide the researchers a firm grounding in a virtue ethics approach to research integrity.
The training of 10 researchers can be completed as part of the 'practice' of the participatory exercises during the program, or after the program has finished.
It is possible to provide participating researchers with further information so that they can go on to become trainers themselves. This is optional, and you do not need to do this to obtain the VIRT2UE certificate. If you would indeed like to train people to become trainers, then you must ensure that your trainees read the VIRT2UE guide for trainers on The Embassy of Good Science (in addition to the one for trainees) and attend an additional session to exchange experiences of facilitating the exercises. If necessary, this exchange of experiences can be replaced by a written exercise, peer coaching and/or a video conference if an in-person meeting is not possible (for example, during the pandemic). +
This module draws upon the notion of communal practices by Alasdair MacIntyre [[#%20ftn1|[1]]] and introduces relevant concepts, such as difference between the concepts of values and norms, as well as moral conflicts and moral dilemmas. In an exercise, the application of these differentiations and the transfer of knowledge into distinguishing two cases from the Rotterdam Dilemma Game[[# ftn2|[2]]], one of which portrays a moral conflict, the other one a moral dilemma.
[http://courses.embassy.science/virtue_ethics_and_research_integrity/story.html Open course]
----[[#%20ftnref1|[1]]] MacIntyre, A. C. (2014). After virtue. London: Bloomsbury.
[[# ftnref2|[2]]] Erasmus University Rotterdam. (n.d.). Retrieved January 30, 2020, from Erasmus University Rotterdam website: https://www.eur.nl/en/about-eur/strategy-and-policy/integrity/research-integrity/dilemma-game
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This module aims to explain and demonstrate the underlying dynamics and relevance of cognitive dissonance for the research process. Along with the example of honorary authorship, it is discussed how conflicting imperatives (or underlying conflicting values) inherent in the current research system may be experienced as cognitive dissonance or moral distress. This module further invites to reflect upon the experience of cognitive dissonance and moral distress in one's research.
[http://courses.embassy.science/cognitive_dissonance_and_moral_distress/story.html Open course] +
This module explores research integrity on three levels, the individual researcher, research culture, as well as the research system. Drawing largely upon the report “What researchers think about the culture they work in” by WELLCOME for Shift Learning (2020)[[#%20ftn1|[1]]], different aspects of research integrity are discussed. This discussion is further complemented by the introduction of the Hong Kong Principles for Assessing Researchers[[#%20ftn2|[2]]].
[[File:Three levels of Research Integrity.png|link=http://courses.embassy.science/three_levels_of_research_integrity/story.html]]
If you want to integrate this module into your institution's learning management system, you may download it as a SCORM Package [http://courses.embassy.science/Three%20levels%20of%20Research%20Integrity_SCORM.zip here]
'''''References'''''
[[#%20ftnref1|[1]]] Moran, H., Karlin, L., Lauchlan, E., Rappaport, S. J., Bleasdale, B., Wild, L., & Dorr, J. (2020). Understanding Research Culture: What researchers think about the culture they work in. ''Wellcome Open Research, 5''(201), 201.
[[#%20ftnref2|[2]]] Moher, D., Bouter, L., Kleinert, S., Glasziou, P., Sham, M. H., Barbour, V., ... & Dirnagl, U. (2020). The Hong Kong Principles for assessing researchers: Fostering research integrity''. PLoS Biology, 18''(7), e3000737. +
