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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We will begin by watching a short video on '''environmental justice'''. After watching the video, you will be asked to complete a brief questionnaire based on the content you’ve just seen. +
The purpose of this exercise is to facilitate an understanding of sustainability as a wicked problem. At the end of the video, some questions will help you reflect on what you have seen. +
Please <span lang="EN-US">read through the introductory PowerPoint presentation “From disconnection to planetary stewardship"</span> +
Incorporating gender, health, and climate justice in your research: A reflexive question card exercise +
Please <span lang="en-DE">go through the summary PowerPoint presentation about the rationale for incorporating gender, health, and climate dimensions together.</span>
<span lang="en-DE">These themes (gender and social positioning, health equity, climate justice, reflexivity, and intersectionality) help uncover hidden power dynamics in research.</span>
<span lang="en-DE">The goal is not to memorise definitions, but to reflect on how these issues relate to their own research.</span> +
Watch this short video introducing ethics of care (or care ethics).
'''Video''' +
Laboratories consume a huge amount of plastic, the majority of which is single use, and not recycled. Green Labs Austria presents the problem of plastic waste from labs and gives guidelines on where to start in addressing the problem in a lab (Green Labs Austria, 2024. ''Pioneering sustainability in scientific research.'' ''MIT Science Policy Review''). Through a background study, they evaluate what plastic materials can be recycled, which ones can be replaced and how can plastic materials be recycled for greener labs ([https://www.youtube.com/watch?v=aojnkoh4fPA Tackling the plastic problem in the lab]).
'''Watch this video and familiarize yourself with the types of plastic materials used in labs which can be recycled or replaced as well as the steps involved in the setting up of a plastic recycling pipeline.''' +
<span lang="EN-US">Open to the podcast episode below.</span> +
<span lang="EN-US">The methodology of BEYOND cases is rooted in the values clarification method. It simultaneously develops discussions on ethics and values-related issues while enhancing competencies necessary for dialogic communication, including: '''1) skills for listening and responding, 2) openness, 3) empathy, and 4) mutuality orientation'''<sup>5</sup>.</span>
<span lang="EN-US">This particular methodology has been developed through various educational games created by the Centre for Ethics at the University of Tartu, with the first game released in 2010 for teachers. Subsequent games have been designed for medical workers, students, researchers and the general public. The training material is intended for use as active learning methods with high interactivity, such as group work and group discussions. The method combines individual activities (taking first personal responsibility via choosing one’s own solution) with group activities (discussing the case, solutions and their underlying motivations and values, and potentially reaching a consensus).</span>
<span lang="EN-US">The material consists of ethical dilemmas which are developed in accordance with the methodology described by Parder et al. (2024)<sup>6</sup>.</span>
* The narrative is described from the perspective of the protagonist – the protagonist must be someone that the trainees find it easy to identify with.
* <span lang="EN-US">The characters and the basic relationships between them are described without too much detail, leaving thus room for trainees to fill the missing information with their own life experiences.</span>
* <span lang="EN-US">The information about the motives of the actors has been kept to a minimum to give the trainees an opportunity to draw from their experiences.</span>
* <span lang="EN-US">The temporal dimension of the narrative is also kept limited – in some cases background information is given, but the pre-given choices were kept within one temporal moment.</span>
* <span lang="EN-US">· The dilemma and the pre-given solutions were balanced – the narrative was written from the neutral perspective and the pre-given solutions were morally acceptable from the perspective of at least one ethical theory.</span>
<span lang="EN-US">The drafting of solutions was inspired by four ethical theories: deontology, utilitarianism, care ethics and virtue ethics. It has to be noted that the solutions are not in perfect accordance with the theories as the aim of this training methodology is not to teach ethical theories to trainees, but rather to provide realistic alternative solutions to choose from.</span>
<span lang="EN-US">Finally, the aim of the methodology is not to teach a “right” answer to the dilemma as dilemmas often involve conflicts between two or more valuable ethical principles, but to focus on the reflection of the cases and solutions and to guide participants to carry out moral reasoning with emphasis on the skills of listening and discussing.</span><div>
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'''<span lang="EN-US">'''<span lang="EN-US">[5]</span> <span lang="ET">Kent , M. L., and Taylor, M. (2002).</span> <span lang="EN-US">Toward a Dialogic Theory of Public Relations. ''Public Relations Review,'' ''28''(1), 21–37. https://doi.org/10.1016/S0363-8111(02)00108-X; Taylor, M., and Kent, M. L. (2014). Dialogic Engagement: Clarifying Foundational Concepts. ''Journal of Public Relations Research,'' ''26''(5), 384–398. https://doi.org/10.1080/1062726X.2014.956106; Yang, S.-U., Kang, M., and Cha, H. (2015). A Study on Dialogic Communication, Trust, and Distrust: Testing a Scale for Measuring Organization–Public Dialogic Communication (OPDC). ''Journal of Public Relations Research,'' ''27''(2), 175–192. <span lang="ET">https://doi.org/10.1080/1062726X.2015.1007998</span></span>
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<span lang="ET"><span lang="ET">[6]</span></span> <span lang="EN-US">Parder, M. L., Tammeleht, A., Juurik, M., Paaver, T., Velbaum, K., and Harro-Loit, H. (2024). Digital Discussion Game on Values: Development, Use and Possibilities for Measuring Its Functionality. In Y. P. Cheng, M. Pedaste, E. Bardone, Y. M. Huang (eds). (2024). Innovative Technologies and Learning. ICITL 2024. Lecture Notes in Computer Science, 14785. Springer, Cham.</span>
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Close the exercise with underlining the importance of good communication in dealing with research integrity issues and dilemma’s. Continue with the next fragment or next part of the workshop. +
Varieties of goodness in research - a rotary style exercise (variation to original VIRT2UE exercise)) +
Each subgroup presents the results of the last round to the other groups.
The trainer thanks the participants for their work and the sharing of personal examples; recaps the lessons learnt and might refer to the objectives of the exercise that were presented at the start.
End with evaluation.
Depending on the agreements made prior to the training, the trainer might take a photo of each sheet and share these photo's with the participants so each can look back at the results. +
04 - Moral Case Deliberation: A Method for Analysing Cases in Research Ethics and Research Integrity +
Lastly, learning experiences and the outcome are evaluated. +
Ask the group to reflect on the process, and to evaluate if the learning objectives were met. Foster a brief dialogue on what might have been learned as a group.
In this step the facilitator may ask participants questions such as:
- Was it easy or difficult to identify the relevant principles and virtues in the chosen dilemma?
- Did this exercise help you with identifying and connecting to formally defined principles (e.g. from the European Code of Conduct for Research Integrity)?
- Did most of the players agree or disagree with the final choice?
- What were the main points of contention?
- Why did people disagree (e.g. differences in experience, training, background, values, norms…)?
- What were the other options?
- Was any alternative option proposed?
- Did anybody change her/his mind as a result of the discussion?
- Why would you NOT follow the morally ideal course of action?
- What is needed to act morally in your work setting? What were the most convincing arguments used in the discussion?
- On which areas do you feel there is insufficient consensus?
- How can you best address future dilemmas in your daily work?
- How can shared values and principles be fostered? +
This final part of the manual consists of two instructions, with the links listed below:
[https://public.3.basecamp.com/p/R5e8zxXRHwd27Mz5PPfooByh Certification]
[https://public.3.basecamp.com/p/vmLSq94iGyaNsbrWKFgFbCiN Recognition and networking] +
Katılımcıları sürecin geneli üzerine düşünmeye davet edin: bu oturumdan çıkardıkları dersler neler? Katılımcılara aşağıdaki soruları sorarak belirli sonuçlar çıkarmaya çalışın:
o Erdemler ve normlar arasında ilişki kurmak kolay mıydı yoksa zor muydu? Neden?
o Kendinizi vakayı sunan kişinin yerine koymanız erdemlere ve dolayısıyla norm ve davranışlara olan bakış açınızı genişletti mi?
Diğer katılımcıların belirlediği erdem ve normlar/ davranışlar sizin erdemlere daha farklı ya da geniş bir açıdan bakmanıza yardımcı oldu mu? Bunun uygulamada karşılaşacağınız AED ikilemleri karşısında düşünme şeklinizi etkileyeceğini düşünüyor musunuz? +
Gruptan genel olarak süreç üzerine fikir yürütmelerini ve bu alıştırma bağlamında öğrenme hedeflerinin karşılanıp karşılanmadığına ilişkin bir değerlendirme yapmalarını isteyin. Katılımcıları bu alıştırma ile neler öğrendikleri üzerine kısa bir diyalog yürütmeye yönlendirin.
Bu aşamada eğitmen katılımcılara aşağıdakilere benzer sorular sorabilir:
- Seçilen ikilem için ilgili prensip ve erdemleri belirlemek kolay oldu mu?
- Bu alıştırma sizin resmi olarak tanımlanmış prensipleri (ECoC) tespit edip bunlarla vakalar arasında bağlantı kurmanıza yardımcı oldu mu?
- Oyunu oynayan katılımcıların büyük çoğunluğu varılan nihai karara muvafakat etti mi?
- Anlaşmazlığa yol açan başlıca noktalar nelerdi?
- Katılımcıların bazı noktalarda hemfikir olmamasına sebep olan şeyler nelerdi (örn., kişilerin deneyimlerindeki, eğitimlerindeki, arka planlarındaki, değerlerindeki, normlarındaki vb. farklılıklar)
- Diğer seçenekler neydi?
- Herhangi bir alternatif seçenek önerildi mi?
- Tartışma sonucunda herhangi bir katılımcı fikrini değiştirdi mi?
- Ahlaki açıdan ideal olan şeyi YAPMAMANIZIN sebebi ne olurdu?
- Sizin iş ortamınızda ahlaki olarak iyi olana ulaşmak için neler gerekli?
- Tartışmada kullanılan en ikna edici argümanlar hangileriydi?
- Hangi noktalarda yeterince fikir birliğine varılmadığını düşünüyorsunuz?
- Gelecekte iş yaşamınızda bu gibi ikilemlerle en iyi hangi şekilde başa çıkabilirsiniz?
- Üzerinde daha yaygın bir şekilde anlaşmaya varılan değer ve ilkelere nasıl ulaşılır? +
Lade die Teilnehmenden abschließend ein, über den gesamten Prozess während der vergangenen Übung nachzudenken: Was ist für sie die Take-Home-Message, die sie aus dieser Übung mitnehmen? Versuche, einige Schlussfolgerungen oder Erkenntnisse festzuhalten, indem du die Teilnehmenden fragst:
- War es einfach, die Werte/Tugenden zu den Normen in Beziehung zu setzen? War es schwierig? Warum?
- Hat der Versuch, sich in die Lage der Person zu versetzen, die die Beispielsituation erlebt hat, deine Sichtweise auf Werte/Tugenden und damit auch auf Normen oder Verhaltensweisen erweitert?
- Haben die von anderen genannten Werte / Tugenden, Normen oder Verhaltensweisen dabei geholfen, anders über das Thema nachzudenken und zum Beispiel Werte / Tugenden anders oder umfassender zu betrachten? Wie wird diese Erfahrung aus der Übung heute dein Denken über Dilemmata im Forschungsalltag verändern? +
Invite participants to think about the entire process: what is the take home message of this session for them? Try to draw conclusions by asking participants:
o Was it easy or difficult to relate the virtues and norms to each other? Why?
o Did putting yourself in the case presenter’s shoes broaden the way you looked at virtues and, consequently norms and behaviors?
o Did the virtues and norms/behaviors identified by others help you to look at virtues differently or more broadly? Do you think that will influence your thinking on research integrity dilemmas in practice? +
[[File:Man overlooking view.png|center|frameless|600x600px]]
Kuhn suggested that all scientific knowledge is ‘situated’ knowledge and cannot represent a ‘view from nowhere’. We all view the world from within a particular set of social and epistemic practices. According to Kuhn, scientists working within different paradigms are effectively working in different worlds. But how do we know which paradigm we are working in? +
From biological samples to precision medicine for patients. Virchows Arch. 2021 Aug;479(2):23Annaratone 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:3-246. doi: 10.1007/s00428-021-03151-0. Epub 2021 Jul 13. PMID: 34255145; PMCID: PMC8275637.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8275637/
BBMRI-ERIC Common Service ELSI
https://www.bbmri-eric.eu/services/common-service-elsi/
European Commission (2018) Data protection in the EU
https://commission.europa.eu/law/law-topic/data-protection/data-protection-eu_en
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
Harati, M.D., Williams, R.R., Movassaghi, M., Hojat, A., Lucey, G.M., Yong, W.H. (2019). An Introduction to Starting a Biobank. In: Yong, W. (eds) Biobanking. Methods in Molecular Biology, vol 1897. Humana Press, New York, NY. https://doi.org/10.1007/978-1-4939-8935-5_2
Healthtalk.org What is biobanking and why is it important? https://healthtalk.org/experiences/biobanking/what-is-biobanking-and-why-is-it-important/
ISBER (International Society for Biological and Environmental Repositories) (2024) Best practices for repositories https://www.isber.org/page/BPR
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.oecd.org/health/biotech/guidelines-for-human-biobanks-and-genetic-research-databases.htm
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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In terms of ethics dumping, the previously mentioned TRUST global code of conduct for equitable research partnerships offers a simple, jargon-free [https://www.globalcodeofconduct.org/the-code/ ethics code] comprised of 23 articles based around the moral values of Fairness, Respect, Care and Honesty, to help researchers ensure that international research is equitable and carried out without ‘ethics dumping’ or ‘helicopter research’.
In terms of AI ethics, we recommend consulting the Ethics of AI in Healthcare: A checklist for Research Ethics Committees which was developed by irecs colleagues, Alexei Grinbaum and Etienne Aucouturier at CEA (French Alternative Energies and Atomic Energy Commission), as well as the materials in the [https://classroom.eneri.eu/node/238 irecs AI and ethics module].
Chapter 5 of the [https://www.who.int/publications/i/item/9789240029200 World Health Organization’s Ethics and Governance of Artificial Intelligence for Health] outlines six key ethical principles for AI research in healthcare. These include protecting patient autonomy, promoting human wellbeing, ensuring transparency and explainability, fostering accountability, promoting inclusiveness and equity, and supporting AI that is both responsive and sustainable. These principles serve as essential reminders for researchers and policymakers to prioritise ethical considerations in the development and deployment of AI technologies in healthcare settings.
Another significant issue in the development of AI technologies across all fields is the potential for bias and inaccuracies in algorithms, which in the healthcare domain can result in incorrect diagnoses and treatment recommendations. These risks disproportionately affect vulnerable populations, raising concerns about inclusivity and equity. The [https://op.europa.eu/en/publication-detail/-/publication/d3988569-0434-11ea-8c1f-01aa75ed71a1 EU’s Ethics Guidelines for Trustworthy AI] emphasise that AI systems must be lawful, ethical, and robust throughout their Life cycle. This includes compliance with applicable laws, adherence to ethical principles, and ensuring technical and social robustness. Importantly, these guidelines call for mechanisms to prevent algorithmic bias and protect privacy. Unethical applications involving AI are defined as those that risk violating physical or mental integrity, create addiction, risk damaging social processes and public institutions (e.g. by social scoring or contributing to misinformation).
Projects must adhere to essential requirements, which encompass (but are not restricted to):
* People must be made aware that they are interacting with an AI system, its abilities and Limitations, risks and benefits.
* Mechanisms for human oversight, transparency and auditability must be built into the AI system.
* AI-systems must be designed to avoid bias in input data and algorithmic design.
* Compliance with data protection and privacy principles must be demonstrated.
Our hypothetical proposal is not seeking funding from Horizon Europe, however, the [https://www.bbmri-eric.eu/wp-content/uploads/The-Ethics-Appraisal-Scheme-_BBMRI-webinar-september-2021_version-for-dessimination.pdf EU ethics appraisal scheme (pp74-80)], provides relevant guidance for several concerns in this case study. It highlights the importance of transparency, requiring that individuals interacting with AI systems be fully informed about the system’s capabilities, Limitations, risks, and benefits. It also underscores the necessity of building human oversight, transparency, and auditability into AI systems, ensuring that AI development remains accountable and aligned with societal values.
Regulatory oversight has often lagged behind technological advancements, creating additional legal and ethical challenges. The WHO and EU guidelines, among others, stress the need for AI systems to comply with data protection and privacy principles, such as data minimisation, ensuring that only the necessary data is collected and used. This is crucial in building trust and safeguarding against the misuse of sensitive healthcare information.
It is important to remember that different guidelines and regulations will apply to research projects in order to comply with the requirements of different institutions, organisations and geographical locations. Listed in the further resources section are sources to explore on ethics dumping, some of the ethics committees in Africa and the current most relevant EU or international guidelines or standards related to AI in health and healthcare, but you may need to explore further afield to locate those that apply to different situations.
