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
1
[[File:M11..png|center|frameless|600x600px]]
This case study explored the ethical complexities of a malaria research proposal using AI to predict disease transmission hotspots in Sub-Saharan Africa. The project, led by researchers from high-income countries, illustrates critical ethical concerns around ethics dumping and AI ethics, particularly when research is conducted in low- and middle-income countries. Key ethics dumping issues included a lack of meaningful involvement of local researchers, limited benefit-sharing with participating communities, and insufficient local control over data ownership.
The AI ethics concerns centered on informed consent complexities, data privacy, and transparency in AI processes which is especially challenging when participants may not fully understand how their data is used by advanced algorithms.
The TRUST Global Code of Conduct principles—fairness, respect, care, and honesty—highlight the need for equitable and respectful research practices. Addressing these values in the proposal would promote ethical research partnerships, prevent exploitative practices, and ensure that the benefits extend to the local communities and health systems involved. This case study underscores the importance of balancing innovative research with robust ethical standards to foster trust, inclusivity, and long-term impact in global health initiatives. +
Now it is time to decide whether or not to approve the study. As a member of the research ethics committee, which option will you go for?
'''Feedback'''
While gene drive technology presents a potentially revolutionary solution to malaria control, it raises a host of ethical concerns, particularly regarding ecological impacts, human consent, and long-term consequences. Careful consideration of these risks and proactive steps to mitigate them will be essential to the responsible development and deployment of this technology. +
[[File:A view of mountains high up on a hill.png|center|frameless|600x600px]]
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. +
<blockquote>Is it ethical to intentionally infect healthy volunteers with a deadly virus? This video discusses the ethical controversy surrounding human challenge studies, particularly those involving SARS-CoV-2, the virus that causes COVID-19. While these studies can be valuable for scientific progress, they raise concerns about the Hippocratic Oath, which states "first do no harm." On the other hand, human challenge studies have been used in the development of other vaccines, such as malaria.</blockquote> +
[[File:S1.png|center|frameless|600x600px]]
It is generally agreed across ethics codes that the involvement of people with these types of vulnerabilities requires special justification and special protections. Indeed, the Declaration of Helsinki states that medical research with a vulnerable group is only justified if the research is responsive to the health needs or priorities of this group and the research cannot be carried out in a non-vulnerable group (Article 20).
Of course, we need to protect people from exploitation in research but ethics codes and processes that aim to protect vulnerable populations might inadvertently lead to the exclusion of certain individuals if they are wrongly labelled as vulnerable, or the researchers do not understand how to mitigate their vulnerability in research. +
[[File:Ext.Image12.png|center|frameless|600x600px]]
Miltos Ladikas shares his thoughts on manipulation in XR.
People are susceptible to manipulation particularly with extended reality more than any other technology, I believe. Because extended reality intrudes into people's mind like no other technology that we know of. The reason is that extended reality creates, basically, reality. That's why it's called extended reality. And this reality, which is not exactly real, it might be augmented, might be totally virtual, but in any case, it's something that our brain, our mind, our cognitive functions, accept as real.
And once you get to that point, then the possibilities for manipulation are manifold, actually. And we know that from research that psychologists have done by using extended reality, especially these [https://c/Users/hpartington/AppData/Local/Microsoft/Windows/INetCache/Content.Outlook/83I5BQ72/cave CAVE] systems, as they call them, whereby you are in an extended reality environment, totally immersed in this environment. And so they use that to achieve, and they have achieved, better results in psychotherapy as a matter of fact. For example, acrophobia, height phobia, vertigo, for instance. And although this is, of course, a good aspect of, a good use, let's say, of extended reality, it shows how far it can go into manipulating our minds and even our belief systems, and how this manipulation can be really long term.
So, yes, there is a real risk of manipulation by using extended reality. We should be aware of that. As I said before, of course, manipulation can have good aspects. Like, you know, we need to manipulate in psychology, instance, we do need to manipulate, the mind in order to create a better functioning. If you like, in a very blunt way, better functioning, cognitively, at least the mind.
But one can imagine a lot of cases where this kind of manipulation, especially in younger people, and don't forget that extended reality is more accepted and more used by the younger generation for a very simple reason. They are more immersed into new technologies, in any case. They accept these new technologies, they have them in their lives, every day, from social media to, well any kind, basically, of new technologies that are out there. It's part of growing up, I suppose, nowadays. But that also means that young minds, which are yet not well-formed, if you like, socially at least, and even individually in many respects, they can really be manipulated through extended reality for, well, any kind of purpose imaginable by the ones that use basically and develop and distribute extended reality.
The informed consent process should explain the study risks and benefits fully and clearly in terms of what is known, what is uncertain and what is unknown +
In this lecture, Heidi Beate Bentzen examines the conflict between personal data protection and the objectives of Open Science. Initially, she delves into the principle of data minimisation, followed by an analysis of the barriers to global data sharing.
'''Watch the lecture and then answer the questions.'''
'''Further reading:'''
Dennis, S., Garrett, P., Yim, H., Hamm, J., Osth, A. F., Sreekumar, V., & Stone, B. (2019). Privacy versus open science. Behavior Research Methods, 51(4), 1839–1848. https://doi.org/10.3758/s13428-019-01259-5
Phillips, M., & Knoppers, B. M. (2019). Whose Commons? Data Protection as a Legal Limit of Open Science. Journal of Law, Medicine & Ethics, 47(1), 106–111. https://doi.org/10.1177/1073110519840489
Paseri, L. (2023). Open Science and Data Protection: Engaging Scientific and Legal Contexts. Journal of Open Access to Law, 11(1), Article 1. https://doi.org/10.63567/1bnsyb91 +
[[File:AI Img10.png|center|frameless|600x600px]]
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. +
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! +
[[File:ReImg8..png|center|frameless|600x600px]]
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.
[[File:ReImg9..png|center|frameless|400x400px]]
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? +
[[File:AI Image11.png|center|frameless|600x600px]]
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? +
[[File:Mm12.png|center|frameless|600x600px]]
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. +
[[File:Privacy printing blocks.jpg|alt=privacy printing blocks|center|frameless|600x600px|privacy printing blocks]] +
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%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! +
[[File:Bio2Image13.png|center|frameless|600x600px]]
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. +
[[File:M12..png|center|frameless|600x600px]]
<div><div>
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.
</div></div><div><div></div></div> +
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! +
[[File:Wooden figures joined by lines.png|center|frameless|600x600px]]
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.
[[File:Chair.png|center|frameless|700x700px]]
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> +
