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AI & Malaria Research + ([[File:M4..png|center|frameless|600x600px] … [[File:M4..png|center|frameless|600x600px]]Professor Smith is very excited about this proposal, and looking forward to getting started on the research once the study has ethics approval. She feels that by going for dual approval from both her own and Dr Jones’ institution, the team have covered all necessary requirements for ethics approval. However, she hears that two podcasters have got hold of some information about the project and are raising concerns about ethics dumping issues. Please listen to Brad and Janet’s podcast and see if you agree with them.What do you think about the points made by Brad and Janet? Do you think that the issues they raised are valid? Do you have any concerns about the proposal that they didn’t mention? Take a few moments to think this through before moving on to the next screen.rough before moving on to the next screen.)
Social Justice, Vulnerability and Inclusion + ([[File:M4.png|center|frameless|600x600px]] '''Social Justice In Research Ethics Codes''')
AI & Malaria Research + ([[File:M5..png|center|frameless|600x600px] … [[File:M5..png|center|frameless|600x600px]]Professor Smith asks Dr Jones if he knows anything about ethics dumping and helicopter research. Dr Jones contacts an old colleague, Dr Langa, to ask for his advice.<div><div>'''Final Thoughts'''By aligning the malaria research proposal with the TRUST Code, the project can transition from a potentially extractive model to an inclusive and equitable approach. This will not only safeguard the rights and welfare of the local communities but will strengthen the overall impact and sustainability of the research. Following the TRUST Code will also foster genuine partnerships between African and international researchers, helping to build a foundation for ethical, impactful research that truly addresses the health challenges of local populations.</div></div>e health challenges of local populations. </div></div>)
Social Justice, Vulnerability and Inclusion + ([[File:M5.png|center|frameless|600x600px]] … [[File:M5.png|center|frameless|600x600px]]‘Leaving no one behind’ is a principle often invoked in the context of social justice. It emphasises the importance of ensuring that progress and development benefits all individuals and groups within society, particularly those who may be marginalised or vulnerable. The concept recognises that systemic inequalities and discrimination can prevent certain groups from fully participating in and benefiting from development initiatives.Marginalization in research refers to the systematic exclusion, underrepresentation, or neglect of certain individuals or groups within the research process. Marginalized groups can include those who are disadvantaged or oppressed based on factors such as race, ethnicity, gender, sexual orientation, socioeconomic status, disability, or other identity markers. Marginalization can occur at various stages of the research process, including study design, data collection, analysis, interpretation, and dissemination.alysis, interpretation, and dissemination.)
AI & Malaria Research + ([[File:M6..png|center|frameless|600x600px] … [[File:M6..png|center|frameless|600x600px]]<div><div>Dr Langa’s advice helps Professor Smith and Dr Jones realise that at the very least they need to address issues around Helicopter research, Benefit Sharing, Knowledge transfer, Informed consent, Data Ownership and Local ethical oversight. Flip the cards to find out ways they might address these issues.</div></div><div></div>ey might address these issues. </div></div><div></div>)
Social Justice, Vulnerability and Inclusion + ([[File:M6.png|center|frameless|600x600px]] … [[File:M6.png|center|frameless|600x600px]]Addressing marginalization in research requires a commitment to diversity, equity, and inclusion throughout the research process. This includes actively involving marginalized communities in research design and decision-making, adopting culturally responsive methodologies, acknowledging and addressing power imbalances, and prioritizing the voices and perspectives of those who have been historically marginalized. However, the equitable inclusion of all is not always easy and can raise specific ethical concerns. Including historically marginalized populations in research requires sensitivity and may, on some occasions, require adaption of research processes, methodologies and assumptions. processes, methodologies and assumptions.)
AI & Malaria Research + ([[File:M7..png|center|frameless|600x600px] … [[File:M7..png|center|frameless|600x600px]]Thus far we have mainly focused on concerns with the ethics dumping issues identified in this proposal. However, it is also important to consider the proposed use of AI technologies in the study and examine the ethics issues that arise from this aspect of the research.Some AI-related risks have already been touched on in Brad and Janet’s podcast (e.g. explainability, informed consent, accountability), and in Dr Langa’s advice on ethics dumping (e.g. data ownership and access, and capacity building), demonstrating that ethics issues may overlap different domains.Professor Smith and Dr Jones request a report from their colleague Dr Corry to summarise the AI ethics issues and potential impacts relevant to the proposed study. Watch the video to access Dr Corry’s report.tch the video to access Dr Corry’s report.)
Social Justice, Vulnerability and Inclusion + ([[File:M7.png|center|frameless|600x600px]] … [[File:M7.png|center|frameless|600x600px]]We now consider a short example case in which social justice is relevant. In this case, both the exclusion and inclusion of a specific population provoke ethical and methodological questions. We encourage you to reflect on the intersection of social justice and research ethics in this case to consider the pros and cons of inclusion and exclusion. pros and cons of inclusion and exclusion.)
AI & Malaria Research + ([[File:M8..png|center|frameless|600x600px]] Dr Corry’s report helps Professor Smith and Dr Jones identify the primary AI ethics issues that need to be addressed in their study. Flip the cards to find out ways they might address these issues.)
Social Justice, Vulnerability and Inclusion + ([[File:M8.png|center|frameless|600x600px]] … [[File:M8.png|center|frameless|600x600px]]The word vulnerability can be broadly used to describe a state or condition of being susceptible to harm, exploitation, or other adverse outcomes due to various factors or circumstances. It is difficult to define precisely because multiple and diverse factors can contribute to vulnerability such as systemic inequalities, health status, social dynamics, environmental conditions, or individual characteristics. Additionally, it can affect individuals, groups, or communities and manifest in various ways. Furthermore, the word vulnerability does not have a precise equivalent in many languages. Still, it is important for researchers to have an understanding of the concept of vulnerability because it has significant implications for research ethics.nificant implications for research ethics.)
AI & Malaria Research + ([[File:M9..png|center|frameless|600x600px] … [[File:M9..png|center|frameless|600x600px]]Before Professor Smith and Dr Jones proceed any further with this proposal, they realise that they need seek out local partners in each of the three countries and find out:Is this research wanted or needed by the communities in Mozambique, Uganda and Tanzania?What research on the prediction of Malaria outbreaks has already been carried out in these communities?What interventions are already in place?How successful are the interventions?Would the proposed research risk undermining local interventions to mitigate the risk of Malaria outbreaks?Let’s suppose that they get a positive response from a university in one of the countries who would like to collaborate with them and suggest that it would be preferable to start with a pilot of the project.Of course, as many of the issues cut across both ethics dumping and AI ethics issues, it will be necessary for the research teams to consult ethics guidelines and codes from both angles as they revise their proposal in collaboration with the local partner institution.ration with the local partner institution.)
Social Justice, Vulnerability and Inclusion + ([[File:M9.png|center|frameless|600x600px]] … [[File:M9.png|center|frameless|600x600px]]Well actually, vulnerability emerges when you have life challenges, and you have limited resources. And vulnerability can be intrinsic to the person, or it can be something that emerges at some point of your life. So, if you think about for instance, persons with visibility impairments, so they are not able at some point to understand exactly what the research is about or to have a full understanding of the informed consent. So, this is a group of vulnerable people. So, this is a group of vulnerable people.)
Critical Thinking, Standpoint & Ethics + ([[File:Man overlooking view.png|center|fra … [[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? we know which paradigm we are working in?)
Critical Thinking, Standpoint & Ethics + ([[File:Man thinking .png|center|frameless| … [[File:Man thinking .png|center|frameless|600x600px]]Philosopher Immanuel Kant maintained that a priori knowledge is independent of experience. He contrasted this with a posteriori knowledge, which has its sources in experience and observation. In life, most knowledge is of the a posteriori form;it is rooted in experience and observation.Watch this video to find out why philosophers think there might be a problem with this.'''The Problem Of Induction'''Understanding how we construct knowledge helps us to take a critical standpoint and to exercise caution when making assumptions about proof. As well as the above evidence-proof issue, it is also important to acknowledge the impact of the researcher on the creation of knowledge.e researcher on the creation of knowledge.)
Critical Thinking, Standpoint & Ethics + ([[File:Man thinking.png|center|frameless|6 … [[File:Man thinking.png|center|frameless|600x600px]]Critical reflection is the process by which adults identify the assumptions governing their actions, locate the historical and cultural origins of the assumptions, question the meaning of the assumptions, and develop alternative ways of acting (Stein, 2000, p1).Now return to your description of the image above and reflect on the following questions: * What assumptions are implicit in my account and where do they come from?* What does my account imply about my basic ideals or values and my personal emotional, social, cultural, historical, or political assumptions?* What might be the perspective of others and how/why is mine different?e of others and how/why is mine different?)
Research Ethics and Integrity Basics + ([[File:Mexican town hall.jpg|alt=mexican town hall|center|frameless|600x600px|mexican town hall]] What ethics issues can you identify in the cases mentioned in this short video? You can download the text if you wish to help you formulate your thoughts.)
Biobanking: Technology Basics + ([[File:Mm.png|center|frameless|600x600px]] … [[File:Mm.png|center|frameless|600x600px]]International cooperation among biobanks is essential for advancing scientific research, promoting data sharing, and accelerating global progress in healthcare. Biobanks employ several methods to facilitate this collaboration such as adhering to standardized protocols for sample collection, processing, and storage. Common practices ensure compatibility and comparability of data across different institutions and countries. Efforts to ensure data harmonization ensure that information collected follows standardized formats. This harmonization allows seamless integration and analysis of datasets from diverse sources.Biobanks often participate in collaborative networks or consortia that span multiple countries. These networks foster communication, resource sharing, and joint research initiatives. Examples include the [https://dcc.icgc.org/ International Cancer Genome Consortium (ICGC)] and the [https://www.ga4gh.org/ Global Alliance for Genomics and Health (GA4GH)]. Data sharing platforms that comply with established standards for security, privacy and interoperability* may be used to facilitate the exchange of data while addressing ethical and legal considerations. Additionally, institutions engaging in international collaboration may establish formal agreements through memorandums of understanding. These agreements outline the terms of collaboration, data sharing, and the responsible use of biological samples.Collaborative research projects involving multiple biobanks encourage the exchange of data and samples for specific research objectives. These projects leverage the collective expertise and resources of participating institutions. International collaborations may also involve capacity-building initiatives to enhance the capabilities of biobanks in developing countries as exemplified by the establishment of a biobank in [https://www.sciencedirect.com/science/article/pii/S2211883723000989 Western Visayas in the Philippines]. Such inclusivity fosters a more equitable and globally impactful approach to research.Biobanks navigate complex ethical and legal considerations when sharing data internationally. They establish clear frameworks for obtaining informed consent, protecting donor privacy, and complying with diverse national and international regulations. To regulate access to shared data, international biobanks often establish data access committees that evaluate research proposals and ensure adherence to ethical, legal, and privacy standards.'"`UNIQ--nowiki-00000001-QINU`"' The term ''interoperability'' refers to the ability of different systems, devices, or software to seamlessly exchange and interpret information, allowing them to work together effectively and efficiently without hindrance. It ensures that diverse components can communicate, share data, and collaborate in a cohesive manner, fostering compatibility and synergy across various platforms or technologies.By employing effective strategies for the sharing of biological samples, biobanks contribute to a global network of knowledge sharing, accelerating scientific discovery, and promoting advancements in personalized medicine and public health on an international scale.d public health on an international scale.)
Social Justice, Vulnerability and Inclusion + ([[File:Mm1.png|center|frameless|600x600px] … [[File:Mm1.png|center|frameless|600x600px]]'''What Is Social Justice? Quiz'''There is no unified definition of social justice. For this reason, in this module we take a working and broad definition of the concept. We interpret social justice as a guiding principle for achieving a just society, including full and equal participation of individuals in all social institutions;fair, equitable distribution of material and nonmaterial goods;and recognition and support for the needs and rights of individuals. To do that, historical processes of oppression and domination of certain populations need to be taken into account to understand current inequalities and injustices.Even if you are not already familiar with the terms ‘social justice’ and ‘social injustice’, you are likely already familiar with the concepts. Take a look at the following eight questions and select the correct answer from the options provided. Be sure to click the small left and right arrows to navigate between questions.ight arrows to navigate between questions.)
Research Ethics in a Global Environment + ([[File:Mm10.png|center|frameless|600x600px … [[File:Mm10.png|center|frameless|600x600px]]The TRUST Code, a global code of conduct for equitable research partnerships, was designed to address ethics dumping. You can watch two videos here about the code: one gives an overview of the code, and one introduces its 23 articles. code, and one introduces its 23 articles.)
Research Ethics in a Global Environment + ([[File:Mm11.png|center|frameless|600x600px … [[File:Mm11.png|center|frameless|600x600px]]In the next video you will hear from some of the people who were involved in developing the TRUST Code, summarizing the 23 articles that promote equitable research partnerships in international collaborative research.s in international collaborative research.)
Research Ethics in a Global Environment + ([[File:Mm12.png|center|frameless|600x600px … [[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. reading page for some relevant resources.)
Research Ethics in a Global Environment + ([[File:Mm13.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.)
Research Ethics in a Global Environment + ([[File:Mm15.png|center|frameless|600x600px … [[File:Mm15.png|center|frameless|600x600px]]'''Equality'''Equality implies that people are treated equally in terms of rights, or access to services etc. without discrimination or unfair advantage. In the context of social justice and human rights, equality involves equal access to resources and opportunities, as well as ensuring that individuals are not disadvantaged or marginalised. This can include efforts to address systemic inequalities, discrimination, and barriers to full participation in society.'''Equity'''Equity refers to fairness in the distribution of resources, opportunities, and rights. It involves ensuring that everyone has access to what they need to thrive and reach their full potential, regardless of their background, identity, or circumstances. Unlike equality, which aims to treat everyone the same, equity recognizes that different individuals or groups may require different levels of support or resources to achieve equal outcomes.[[File:Mm16.png|center|frameless|600x600px]]'''Intellectual property rights'''Intellectual property rights (IPR) refer to the legal rights granted to individuals or entities to protect their creations or inventions, which can include inventions, literary and artistic works, designs, symbols, names, and images used in commerce. These rights typically include patents, copyrights, trademarks, and trade secrets, granting creators or owners exclusive rights to use and control their intellectual property for a specified period. These rights enable individuals and organizations to benefit financially from their innovations and creativity while fostering innovation and creativity by providing incentives for research, development, and investment.'''Traditional knowledge'''Traditional knowledge encompasses the accumulated wisdom, practices, and innovations passed down through generations within a specific culture or community. It includes knowledge about the natural environment, biodiversity, agricultural practices, healing methods, cultural expressions, and other aspects of traditional lifestyles. Traditional knowledge is often orally transmitted and deeply rooted in local customs, beliefs, and experiences. It plays a vital role in sustainable development, biodiversity conservation, and the preservation of cultural heritage.and the preservation of cultural heritage.)
Research Ethics in a Global Environment + ([[File:Mm17.png|center|frameless|600x600px … [[File:Mm17.png|center|frameless|600x600px]]'''Articles and books'''Chatfield, K., Schroeder, D., Guantai, A., Bhatt, K., Bukusi, E., Adhiambo Odhiambo, J., ... & Kimani, J. (2021). Preventing ethics dumping: the challenges for Kenyan research ethics committees. Research Ethics, 17(1), 23-44. Available at: https://journals.sagepub.com/doi/full/10.1177/1747016120925064 (Free to download)Schroeder, D. (2007). Benefit sharing: it’s time for a definition. Journal of medical ethics, 33(4), 205-209.Schroeder, D., & Pisupati, B. (2010). Ethics, justice and the convention on biological diversity. Available at: https://clok.uclan.ac.uk/9695/1/Ethics,%20Justice%20and%20the%20convention.pdf (Free to download)Schroeder, D., Cook, J., Hirsch, F., Fenet, S., & Muthuswamy, V. (2018). Ethics dumping: case studies from north-south research collaborations. Springer Nature. Available at: https://link.springer.com/book/10.1007/978-3-319-64731-9 (Free to download)Schroeder, D., Chatfield, K., Singh, M., Chennells, R., & Herissone-Kelly, P. (2019). Equitable research partnerships: a global code of conduct to counter ethics dumping (p. 122). Springer Nature. Available at: https://link.springer.com/book/10.1007/978-3-030-15745-6 (Free to download)Schroeder, D., Chatfield, K., Muthuswamy, V., & Kumar, N. K. (2021). Ethics Dumping–How not to do research in resource-poor settings. Journal of Academics Stand Against Poverty, 1(1), 32-55. Available at: https://journalasap.org/index.php/asap/article/view/4 (Free to download)Wynberg, R., Schroeder, D., & Chennells, R. (2009). Indigenous peoples, consent and benefit sharing: lessons from the San-Hoodia case (Vol. 15). Berlin: Springer. '''Research ethics codes'''The San Code of Research Ethics, available from: [https://www.hra.nhs.uk/about-us/committees-and-services/res-and-recs/ https://www.globalcodeofconduct.org/affiliated-codes/]The TRUST Global Code of Conduct for Equitable Research Partnerships, available from: [https://allea.org/ https://www.globalcodeofconduct.org/]'''Videos'''More videos can be found here: https://www.youtube.com/@trustandprepared1000s can be found here: https://www.youtube.com/@trustandprepared1000)
Research Ethics in a Global Environment + ([[File:Mm2.png|center|frameless|600x600px] … [[File:Mm2.png|center|frameless|600x600px]]In the rest of this module, we will be focussing specifically upon research collaborations that bring together parties from higher-income and lower-income settings. Often, these partnerships involve local groups or communities who are not researchers but nevertheless contribute to the research in a significant manner via participation or knowledge sharing etc. While these partnerships can be extremely fruitful for all concerned, they can also pose challenges for the equitable distribution of research benefits as described in the next section.benefits as described in the next section.)

Research Ethics in a Global Environment + ([[File:Mm3.png|center|frameless|600x600px]])

Research Ethics in a Global Environment + ([[File:Mm4.png|center|frameless|600x600px] … [[File:Mm4.png|center|frameless|600x600px]]Sometimes, the people who own or provide access to the resources are left with no benefits at all. For a long time, this was the case for the San Indigenous peoples of South Africa. You can hear from members of the San talk about protecting their Indigenous knowledge in this video. Listen to Jan Van Der Westhuizen talk about protecting San Indigenous knowledge.about protecting San Indigenous knowledge.)
Research Ethics in a Global Environment + ([[File:Mm5.png|center|frameless|600x600px] … [[File:Mm5.png|center|frameless|600x600px]]Exploitation of one or more partners can be a problem in international collaborative research because the benefits of research are not always distributed evenly. Researchers must take care to ensure that everyone involved is treated fairly. that everyone involved is treated fairly.)
Research Ethics in a Global Environment + ([[File:Mm6.png|center|frameless|600x600px] … [[File:Mm6.png|center|frameless|600x600px]]Benefit sharing is a legal requirement for all countries that have adopted the CBD. But what constitutes appropriate benefits for those who share their resources in research? Click on the hotspots to see some suggestions.[[Nagoya Protocol on Access to Genetic Resources and the Fair and Equitable Sharing of Benefits Arising from their Utilization to the Convention on Biological Diversity]]Appropriate benefit sharing arrangements may include a package of both monetary and non-monetary benefits. Most important is that fair benefits arrangements are discussed and agreed locally before the research begins.agreed locally before the research begins.)
Research Ethics in a Global Environment + ([[File:Mm8.png|center|frameless|600x600px] … [[File:Mm8.png|center|frameless|600x600px]]The last word on benefit sharing goes to Reverend Mario Mahongo, who was Chair of the South African San Council, 2000 – 2018.What I want to say is, I think there should be a benefit for the people who are being researched. I don’t want researchers to see us as museums that cannot speak for themselves and that don’t expect something in return. We are humans who deserve support. At the end of the day, the researcher is happy because he received what he wanted from us, but we also need to be happy in what we receive from him because we also want to benefit from the research. So, we will allow them to do the research, but it must be based on equality, not one-sided. must be based on equality, not one-sided.)
Research Ethics in a Global Environment + ([[File:Mm9.png|center|frameless|600x600px] … [[File:Mm9.png|center|frameless|600x600px]]Humanities’ challenges require global research, yet global research can have a dark side. Ethics dumping. When researchers from privileged settings offshore unethical research to lower income settings, that's ethics dumping. It can happen on purpose, but also due to lack of awareness and cultural misunderstandings. awareness and cultural misunderstandings.)
Modified Dilemma Game + ([[File:Modified Dilemma Game Table 1.png|t … [[File:Modified Dilemma Game Table 1.png|thumb|'''Table 1: Which principles from European Code for Research Integrity can you identify in each dilemma?''']]Ask participants to work in groups to fill out the below tables. You may suggest groups to assign a member as a spokesman to shortly present their discussions in the next step.[[File:Modified Dilemma Game Table 2.png|thumb|'''Table 2. Which research misbehaviors can you identify in this dilemma?''']][[File:Modified Dilemma Game Table 3.jpg|thumb|'''Table 3. Which scientific virtues are important when deciding on a course of action?''']] [[File:Modified Dilemma Game Table 3.jpg|thumb|'''Table 3. Which scientific virtues are important when deciding on a course of action?''']] )
Biobanking: Technology Basics + ([[File:Mz.png|center|frameless|600x600px]])
Gene Editing Case Study with Human Application + ([[File:People discussing a contract.jpg|ce … [[File:People discussing a contract.jpg|center|frameless|600x600px]]Let’s find out more about the proposed study. While watching the next video, imagine that you are a member of an ethics review committee and your role is to make an assessment about whether or not to approve the study, to ask for changes to be made / further information, or to disallow the study. Make a note of any points or questions that arise for you.[[File:Research_ethics_committee_members_discuss_the_proposal.mp4|600px|centre]]====Video Transcript====The research proposalOver the past 7 years, a multinational group of scientists have been investigating the potential use of hematopoietic stem cell gene therapy as a treatment for Hunter syndrome. Hematopoietic stem cells (HSCs), also known as blood stem cells, are immature cells in the bone marrow that can develop into all types of blood cells. They have two key characteristics:#Self-renewal. HSCs can divide and maintain themselves over long periods of time.#Multipotency. HSCs can generate daughter cells that can differentiate into all blood cell types.Pre-clinical studies undertaken in rodents have successfully demonstrated the potential of the HSC gene therapy to correct Hunter syndrome in the body and normalise brain pathology. Rodents with the syndrome, treated with the HSC gene therapy, showed dramatic improvements in their condition.Now the same research group aims to test the approach in humans. This will be the first time it has been tested in humans. It is anticipated that the treatment via genetic manipulation of the patients’ own cells will result in the delivery of increased amounts of the IDS enzyme. As well as clinical efficacy, the study aims to evaluate the HSC gene therapy’s safety and tolerability, and pharmacodynamic effects.The gene therapy involves collection of HSCs from the patients and inserting a working copy of the defective gene into their HSCs using a lentiviral gene therapy vector. The modified HSCs will then be infused back into the patient to engraft in the bone marrow. If engraftment of modified HSCs in the bone marrow is successful, these cells start to produce daughter blood cells. The daughter blood cells will contain a ''working copy of the IDS'' gene and the IDS enzyme will be distributed throughout the body, including the brain.The study aims to recruit up to ten patients diagnosed with severe Hunter syndrome, aged between 3 months and 24 months at time of enrolment, and who have not yet shown developmental decline.The treatment process will occur in 3 stages:#Stem cell collection.#Conditioning to prepare the bone marrow using chemotherapy.#Infusion of gene-modified cells.The study duration will be 24 months and the young patients will be checked at regular intervals during this period.====The Discussion====There may be opposing views on the research ethics committee about whether this study can be approved. It is certainly a proposal that demands careful ethical scrutiny. In the audio below you will hear from some REC members who discuss some of the issues that need to be considered. Check to see whether they address all of the points or queries that you noted.[[File:Human gene editing REC discussion image.jpg|center|frameless|600x600px]]====Discussion Transcript====Research ethics committee discuss the proposal REC member 1The thing the concerns me most about this proposal is that it will involve very young and incredibly vulnerable children. They can’t consent to their participation, so that responsibility lies with their parents / legal guardians. REC member 2Don’t you think the parents or guardians are in the best position to decide what is in the best interests of their children? REC member 1 I think the parents might feel pressure to consent to participation because they believe the study offers their child the best chance of recovery and that, by participating in this sort of study, their child will get better medical care and attention. REC member 3And the parents are liable to feelings of guilt either way, whether they consent or not. If they don’t consent, then their child will likely die during their teens. If they do consent, and things go wrong, they might feel responsible for making things worse. REC member 4I believe we have a moral duty to pursue research like this. There are more than 7,000 rare genetic diseases that we know of and about three-quarters of these affect children. If improvements are to be made in the care and treatment of these children, research is essential. REC member 2I can see the need for the research, but I wonder why the children have to be so young. Can’t the therapy be tried in adults or older children first? REC member 1I guess that’s because the study must be undertaken before any serious decline occurs, and with severe Hunter syndrome, that is only the case for the very young. Plus, the earlier the treatment occurs, the less damage that can be done. The ideal would be to stop the disease before any damage. REC member 3We must remember that gene editing is still highly experimental, so there might be a number of technical risks, and some of these risks might not even be known. This means that the children could suffer from serious consequences if the procedure fails or even if the procedure is successful. The parents will need to be fully informed about both the technology and the risks. There’s a chance that the treatment might make their child suffer even more than they would have done. REC member 2Yes, that’s true. What about the risks of off-target effects, or on-target effects, immunogenicity or genetic mosaicism? If we don’t know the precise risks, how can we decide whether the potential benefits outweigh the risk of harms to the children? REC member 4I think we can feel somewhat reassured by the fact that this is the same group that has undertaken the earlier testing in animals. They have developed and perfected the technique for this gene therapy, and they are confident that they are now in the position to move to testing in humans. REC member 1I agree. That does help to provide some reassurance, but there’s no way that all risks can be avoided. I would like to know what steps are being taken to minimise those risks. REC member 4We also need to consider the harm the potential for harm associated with the treatment process itself. Both stem cell collection and chemotherapy involve risks. Chemotherapy for bone marrow conditioning can lead to all of the well-known side effects like hair loss, nausea and vomiting, fatigue, and a compromised immune system. Participating in the trial will inevitably increase suffering in the short term. '''Did the committee raise all of your concerns? In the next step we touch on some other points, but first, we ask you to think about balancing potential harms and benefits''' balancing potential harms and benefits''')
Research Ethics and Integrity Basics + ([[File:Person sat at computer in office.jp … [[File:Person sat at computer in office.jpg|alt=person sat at computer in office|center|frameless|600x600px|person sat at computer in office]]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 modules2. For research purposes to evaluate the outcomes of the irecs projectTo 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!d=0 https://forms.office.com/e/K5LH08FyvQ] Thank you!)
Research Ethics and Integrity Basics + ([[File:Pills on a table.jpg|alt=pills on a … [[File:Pills on a table.jpg|alt=pills on a table|center|frameless|600x600px|pills on a table]]Click on the hotspots to see some of the issues we identified.<div>Many of the ethics issues in research are obvious and there are clear guidelines about how these ethics issues should be addressed. However, research can also generate ethics dilemmas that lead to debate about the best course of action. You will see this in the next example from clinical research.</div>[https://embassy.science/wiki/Resource:H5P-82 Click here for an audio version of the text above.]82 Click here for an audio version of the text above.])
Research Ethics and Integrity Basics + ([[File:Privacy printing blocks.jpg|alt=privacy printing blocks|center|frameless|600x600px|privacy printing blocks]])
Research Ethics and Integrity Basics + ([[File:Question mark in speech bubble.jpg| … [[File:Question mark in speech bubble.jpg|alt=question mark in speech bubble|center|frameless|600x600px|question mark in speech bubble]]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.ur answers. No personal data is collected.)
Critical Thinking, Standpoint & Ethics + ([[File:Quiz blocks.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.)
Critical Thinking, Standpoint & Ethics + ([[File:Quiz on wooden blocks.png|center|fr … [[File:Quiz on wooden blocks.png|center|frameless|600x600px]]We begin with some questions to start you thinking about where your knowledge comes from. Do you know the answers to these questions?(Complete the quiz before reading on) Easy? Maybe, but how did you know the answers?These questions represent two different kinds of knowledge: '''a priori''' and '''a posteriori'''. To answer questions A. and C., one can employ reasoning, whereas the answers to questions B. and D. stem from observation and experience.d D. stem from observation and experience.)
XR in Research: A Case Study + ([[File:Re.Img5.png|center|frameless|600x60 … [[File:Re.Img5.png|center|frameless|600x600px]]{| class="wikitable"|+<div><div>It’s not difficult to imagine a wide range of reactions to an advertisement for this project. Some people might be curious to find out more;others will be concerned about possible implications. Why do you think it might be important for researchers to consider what motivates or deters people from participating in the study? This is vital not only for reaching the target numbers, but also to promote fair recruitment, diversity, and inclusion. It would be pointless and unfair if, for instance, only people who already enjoy using XR for socialisation volunteered to participate. With a recruitment strategy that relies upon self-selection, this is a real possibility. The deterring factors raised above touch on some of the issues identified on the XR ethics checklist. Potential participants might not even be aware of many of the ethics issues, but it is the responsibility of the research ethics committee to ensure that all are addressed appropriately.</div></div><div></div>!I’m really curious about XR technologies and I would love to have the opportunity to immerse myself in a virtual world and engage with AI avatars. I would be excited to give it a go.![[File:Rep1.png|thumb]]|-|<div><div><div>There’s no way I’m going to wear those tracking devices. I value my privacy and who knows where that data will end up.<div></div></div></div></div>|[[File:Rep2..png|thumb|link=Special:FilePath/Rep2..pngthumb]]|-|<div><div><div>The thought of feeling cut off from reality scares me. Will I feel like I’m in control? What if I have a panic attack?<div></div></div></div></div>|[[File:Rep3..png|thumb|link=Special:FilePath/Rep3..pngthumb]]|-|<div><div><div>Loneliness is a problem for me. This study will offer an opportunity to engage more, either with avatars or new people. I wouldn’t mind either way.<div></div></div></div></div>|[[File:Rep4..png|thumb|link=Special:FilePath/Rep4..pngthumb]]|-|<div><div><div>I spend a lot of time in virtual worlds anyway. The study will give me an opportunity to reflect on how virtual environments affect my emotions and social wellbeing.<div></div></div></div></div>|[[File:Rep5..png|thumb|link=Special:FilePath/Rep5..pngthumb]]|-|<div><div><div>I’ve tried using a VR headset previously. It’s a hassle to set up, uncomfortable wear and it caused terrible motion sickness and headaches.<div></div></div></div></div>|[[File:Rep6..png|thumb|link=Special:FilePath/Rep6..pngthumb]]|-|<div><div><div>My disability means that I often feel isolated. But as a person with mobility challenges, I assume I can’t participate.<div></div></div></div></div>|[[File:Rep7..png|thumb|link=Special:FilePath/Rep7..pngthumb]]|-|<div><div><div><div><div><div>The idea that interaction with an avatar can help loneliness is warped. It’s not real!<div></div></div></div></div><div></div></div></div></div>|[[File:Rep8..png|thumb|link=Special:FilePath/Rep8..pngthumb]]|}mb|link=Special:FilePath/Rep8..pngthumb]] |})
XR in Research: A Case Study + ([[File:Re4Image.png|center|frameless|600x6 … [[File:Re4Image.png|center|frameless|600x600px]]<div><div>Now we ask you to drop the stance of the REC member for a moment and try to step into the shoes of a potential participant.Please answer the following question, your responses will be recorded anonymously.</div></div>'''Feedback'''<div>People join studies for all different reasons and they each bring with them their different experiences, expectations etc. Read on to see some possible initial reactions. <div></div></div> etc. Read on to see some possible initial reactions. <div></div></div>)
XR in Research: A Case Study + ([[File:ReImage11..png|center|frameless|600 … [[File:ReImage11..png|center|frameless|600x600px]]<div><div>Now that you have considered this case in more depth, it’s time to decide whether you will approve the project.Please answer the following question, your responses will be recorded anonymously.</div>Question: What is your decision?'''Feedback'''Through this case study we have sought to explore the ethics issues associated with the use of VR, AI avatars and generative AI in a research proposal. The proposed project raises a broad range of concerns, some of which are anticipated in the proposal, but many of which are not mentioned. Hence the proposal is not yet ‘approval ready’. With the help of the document, The use of XR technologies in research: A checklist for research ethics committees, it should be possible for you to spot the omissions in the proposal and formulate a list of requirements.However, even if the researchers address all these requirements appropriately, there may still be disagreements about whether the study can be approved, whether the potential for benefits justify the potential risks. Whatever your decision, we ask you to reflect back upon the first question we raised, ‘What experiences and understanding about the use of VR do you bring to this case study?’ Have your opinions and assumptions about the use of VR changed?</div><div><div></div></div>s about the use of VR changed? </div><div><div></div></div>)
XR in Research: A Case Study + ([[File:ReImage13..png|center|frameless|600 … [[File:ReImage13..png|center|frameless|600x600px]]'''Artificial intelligence system:''' in the narrow sense (excluding deterministic "expert systems"), a machine learning system trained on a dataset and designed to operate autonomously, demonstrating adaptability to different inputs and producing outputs, such as predictions, recommendations, decisions or other content.'''Machine learning:''' automatic process by which information is generated in the form of mathematical correlations from a training dataset. Types of machine learning include reinforcement learning, supervised learning (using data annotated by humans) and self-supervised or unsupervised learning (without human labeling). The result of machine learning is called an AI model. An AI model needs fine-tuning and alignment before deployment. When combined with a user interface, an AI model trained on a large dataset to perform a variety of tasks becomes a general-purpose AI system.'''Fine-tuning:''' tailoring an AI model to perform specific tasks, by refining its training on a specialized dataset.'''Alignment:''' the design and application of filters and control mechanisms to prevent undesirable behavior of the AI system.Explainability: the capacity to provide textual or visual content allowing users to achieve satisfactory understanding of the causes that have led to the output of the AI system.'''Reproducibility:''' the capacity to obtain identical or similar results on multiple runs of the AI system with the same input.'''Hallucination:''' plausible but false or unreal output produced by the AI system.Bias: distortions in the outputs that occur when AI systems are trained on non-representative or unbalanced datasets, producing false or discriminatory results which can lead to the loss of user trust.'''Emergent capability:''' as perceived by the user, unpredictable characteristics or behavior of the AI system emerging without any explicit intent of the designer.'''Adversarial attack:''' an attack involving purposefully corrupted data or malicious inputs, designed to cause errors or induce undesirable behavior of the AI system.'''Synthetic data:''' simulated data produced by a very large AI system (itself trained on authentic or synthetic data) with the goal of training a smaller AI system.'''Ethics by design:''' a methodology for analyzing, as early as the design phase of an AI system, the technological choices likely to give rise to ethical tensions. It aims to translate ethical principles into operational measures, while adapting them to evolving standards. It also includes an ongoing evaluation of these measures on realistic use cases. of these measures on realistic use cases.)
XR in Research: A Case Study + ([[File:ReImage15..png|center|frameless|600 … [[File:ReImage15..png|center|frameless|600x600px]]Adomaitis, Laurynas, Alexei Grinbaum, and Dominic Lenzi. ‘D2.2 Identification and Specification ofPotential 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.pdfChasid, 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 VirtualReality’. 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 Philosophy110, no. 9 (2013): 497–517.Suzuki, Keisuke, Alberto Mariola, David J. Schwartzman, and Anil K. Seth. ‘Using Extended Realityto 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/Learning – ARIDLL project: https://aridll.eu/)
XR in Research: A Case Study + ([[File:ReImg7..png|center|frameless|600x60 … [[File:ReImg7..png|center|frameless|600x600px]]One aspect that is not fully described by the researchers or explored by the research ethics committee is that of the AI involvement in the study. AI involvement in the studyParticipants in the VR group will interact with AI driven avatars. This is addressed to some extent as concerns were raised about supervision of the AI system, monitoring of interactions, and accountability etc. Additionally, it was noted that it wasn’t clear whether there would be an AI expert on the research team.However, there is also no AI expert on the research ethics committee and maybe that is why they failed to address the issues associated with the inclusion of a generative AI element in the project. This is what the proposal states: “Additionally, the study hopes to contribute to improving AI-driven avatars in VR environments, to help make them more lifelike and responsive during human-to-AI interactions.” This statement implies that data from the project will be used to train AI models. Did you spot this in the proposal?Generative AI models typically require significant amounts of data, often stored for long periods. This increases the risk of data breaches or unauthorized access, especially given the sensitive nature data collected in this project. Biometric data, coupled with detailed interaction metrics (e.g., frequency, duration of social interactions), can be highly personal and although efforts can be made to anonymise data, the detailed nature of biometric and interaction data could lead to re-identification risks. Secure anonymisation protocols must be emphasised to protect participant identities. If people in the project are not fully aware that their data is being used to train AI models this raises concerns about autonomy and trust.Additionally, there are issues related to data bias and fairness as unrepresentative datasets might skew the AI model’s predictions. The large datasets on which generative AI models are trained can contain biases or stereotypes leading AI avatars to exhibit biased behaviours or make stereotyped assumptions. Participants from underrepresented groups might encounter responses from avatars that reflect these biases, and there may be a lack of nuanced cultural understanding, leading to responses that feel inappropriate or insensitive.Mitigating these risks will require transparency about AI’s nature, strict data handling policies and bias mitigation strategies including fairness in participant recruitment. For proposals like this where there are ethics issues that cross both the involvement of XR and AI, it will be helpful to also consult the document Ethics of [https://classroom.eneri.eu/sites/default/files/2024-12/The%20use%20of%20XR%20technologies%20in%20research.pdf AI in Healthcare: A checklist for Research Ethics Committees.]checklist for Research Ethics Committees.])
XR in Research: A Case Study + ([[File:ReImg8..png|center|frameless|600x60 … [[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?l risks involved in this proposed project?)
XR in Research: A Case Study + ([[File:Rep9.png|center|thumb|500x500px]] … [[File:Rep9.png|center|thumb|500x500px]]Now we return to the research ethics committee perspective. Below is a hypothetical debate between members of a research ethics committee that is informed by the checklist about whether this VR study should be approved. The debate involves the following five characters:*Dr Taylor (Chair of research ethics committee)*Dr Evans (Bioethicist)*Dr Brown (Psychologist)*Dr Adams (Data privacy specialist)*And Ms Amanda Lee (Lay member)Did the research ethics committee discuss all of the issues you identified in the proposal? Did they miss anything important? They are clearly concerned about safeguarding participant wellbeing, privacy and data protection measures, but have they looked for fair participant recruitment or identified all risks and benefits, for example?ified all risks and benefits, for example?)
Research Ethics and Integrity: Governance and Processes + ([[File:Research spelt in bricks.png|center … [[File:Research spelt in bricks.png|center|frameless|600x600px]]The most well-known and widely used example of research ethics guidelines comes from the World Medical Association, which was established in 1947 after World War II, to address growing concerns about unethical medical practice. [https://eneri.eu/national-re-and-ri-infrastructure/ The Declaration of Helsinki – Ethical principles for medical research involving human subjects], (henceforth, ‘the Declaration’) was first adopted in 1964.The Declaration set the standard for ethical medical research involving humans. Even though it acts as a guideline rather than a document with international legal implications, the Declaration has had a great influence on the formulation of regulations and legislation of research, as well as the development of other codes of research ethics. Since its inception, the Declaration has been revised several times.The 37 principles encoded in the Declaration cover a wide range of issues with the primary aim of ensuring the welfare of research participants. Fundamental to this aim is the individual’s rights to self-determination, and the provision of sufficient information to be able to make an informed decision when considering participation in a research study.Today, there are a profusion codes of ethics and guidelines across the world operating at international, national, organisational, and institutional levels. Some are aimed at setting out behavioural standards for professionals such as lawyers, psychologists or policing services. The largest collection of codes is held by the [https://eur-lex.europa.eu/eli/dir/2010/63/oj Center for the Study of Ethics in the Professions] in Illinois, which contains around 4,000 codes and ethics guidelines. around 4,000 codes and ethics guidelines.)
Research Ethics and Integrity Basics + ([[File:Ring by water.jpg|alt=ring by water|center|frameless|600x600px|ring by water]])
Social Justice, Vulnerability and Inclusion + ([[File:S1.png|center|frameless|600x600px]] … [[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. mitigate their vulnerability in research.)