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.
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mage from: Aucouturier E, Grinbaum A (2023) Recommendations to address ethical challenges from research in new technologies. CEA - Commissariat à l’énergie atomique et aux énergies alternatives. https://cea.hal.science/cea-04293426 +
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In humans, gene therapy via gene editing is a rapidly growing field of research with many potential benefits for health and wellbeing. It involves the editing of genes to modify or knock out specific genes to achieve desired traits, to correct genetic defects, to treat or prevent disease, or to enhance cellular functions.
In this module we consider an example proposal for a research project that is based upon a real-world study. The study aims to trial gene therapy for Hunter syndrome in a small group of young children. As you work through the module, we invite you to consider the ethics issues that are associated with this type of study from a variety of perspectives as well as how they might be addressed. We begin with some information about the disease. +
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'''The proposal - Investigating the progression of COVID-19 in diverse population subgroups in Country X and Country Y'''
(a hypothetical case study)
'''Collaborating Institutions:'''
- XYZ Global Health Institute, Country X
- ABC Medical Research Center, Country Y
'''Background:'''
COVID-19 has affected populations worldwide, but the progression and severity of the disease appear to vary significantly among different population subgroups, based on factors such as genetics, socioeconomic status, environmental exposures, and healthcare access. These variations are particularly pronounced between high-income countries and low- or middle-income countries. Understanding these differences is critical to improving public health responses to COVID-19 and future pandemics.
This study aims to investigate the progression of COVID-19 in two diverse countries—Country X (a high-income country in Europe) and Country Y (a low- or middle-income country in Africa)—to identify genetic, environmental, and social factors influencing COVID-19 outcomes. Insights gained will be used to develop predictive models for disease severity and inform public health strategies for more effective pandemic preparedness and response.
'''Research objectives:'''
1. Comparative COVID-19 progression analysis: Examine how COVID-19 progresses in different subgroups (e.g., age, gender, ethnicity, and socioeconomic background) in Country X and Country Y.
2. Genetic and environmental risk factors: Identify genetic markers and environmental exposures (e.g., air pollution, living conditions) that affect COVID-19 severity and outcomes in the two countries.
3. Development of predictive models: Create models to predict disease risk and progression, incorporating genetic, demographic, and environmental data.
'''Study design:'''
The study will be conducted over three years and will involve both prospective and retrospective analysis. It will combine newly collected biosamples and health data with previously donated samples from existing biobanks.
1. Participant recruitment: The study will recruit 5,000 participants from each country. Participants will be selected based on age, gender, ethnicity, and socioeconomic status to ensure diverse representation.
2. Data collection: Biosamples (blood, nasal swabs, saliva) and demographic data (medical history, socioeconomic status, environmental exposures) will be collected from each participant. The samples will be processed and stored in a newly established biobank in both Country X and Country Y for long-term research use.
3. Secondary data use: The study will also utilise biosamples from pre-existing biobanks in both countries, originally collected for other health-related research purposes. These samples will be integrated into the analysis.
4. Data analysis: Researchers will conduct genomic sequencing and environmental exposure analysis to identify factors influencing disease severity. Statistical models will be developed to predict high-risk groups based on the data.
'''Expected outcomes:'''
1. Identification of key risk factors: The study will provide insights into the genetic, environmental, and social factors that influence COVID-19 severity in different subgroups across Country X and Country Y.
2. Predictive tools: The research will result in the development of predictive models to inform healthcare providers and public health officials about populations at higher risk of severe COVID-19 outcomes.
3. Improved public health response: The findings will contribute to more targeted interventions, enhancing pandemic preparedness and healthcare access, particularly for vulnerable groups in Country Y.
'''Expected contribution:'''
This research will provide critical knowledge about the progression of COVID-19 in diverse populations and help inform global and local public health strategies. It will also contribute to a more equitable understanding of pandemic impacts and ensure that all populations benefit from the insights gained.
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The following case study about the 2013-15 Ebola outbreak in Sierra Leone illustrates some of the key ethical issues related to biobanking.
'''The Ebola outbreak in Sierra Leone'''
During the 2013-15 Ebola outbreak in Sierra Leone, ethical issues emerged in the context of biobanking, as researchers sought to understand and combat the deadly virus. A prominent case involved the establishment of biobanks to collect and store biological samples from Ebola patients for research purposes. Following a large-scale collection of diagnostic samples, diagnostic tests were mainly carried out by external laboratories under memoranda of cooperation or material transfer agreements.
Biobanking operations in Sierra Leone contributed significantly to gaining an understanding of the outbreak, but the meeting of ethical standards was deemed inadequate with a lack of a complete inventory of the samples collected, and incomplete information about their potential future use, location, and ownership.
One ethical concern centered around obtaining informed consent from individuals affected by the outbreak. With the urgency of the situation and the widespread fear of the virus, ensuring truly voluntary and informed participation became challenging. Issues of comprehension, especially in remote and vulnerable communities, raised questions about the validity of the consent process.
Another ethical dilemma was the potential for exploitation. The influx of international researchers and organisations into Sierra Leone raised concerns about the fair distribution of benefits and resources. There were fears that the biological samples collected might be used for research benefiting external entities, potentially neglecting the welfare and healthcare needs of the local population.
'''Feedback'''
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Balancing the need for rapid research to address the Ebola crisis with ethical considerations regarding consent, community engagement, and equitable benefits posed significant challenges during this public health emergency. The case underscores the importance of establishing and adhering to clear ethical guidelines and community involvement protocols in biobanking practices, especially in the context of infectious disease outbreaks in resource-limited settings.
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Malaria is a life-threatening disease caused by Plasmodium parasites that are transmitted to humans through the bites of infected female Anopheles mosquitoes. Once inside the human body, the parasites travel to the liver, where they mature and multiply before entering the bloodstream, infecting red blood cells. This leads to symptoms that can range from mild to severe, and without timely treatment, malaria can cause serious complications and even death. Common symptoms of malaria include fever, chills, headache, muscle aches, fatigue, nausea, and vomiting. In severe cases, malaria can cause anaemia, respiratory distress, cerebral malaria (affecting the brain), organ failure, and death if left untreated.
Current interventions, such as insecticide-treated bed nets and antimalarial medications, have some success but they have failed to eradicate the disease. Consequently, new approaches are needed to tackle the persistent transmission of malaria. +
Humans have been hooked on learning for millennia. From Darwin’s curiosity about evolution to our desire for self-improvement, knowledge fuels our world. But it’s not just about personal growth; it's also about solving global problems and making the world a better place. Researchers use everything from ancient wisdom to cutting-edge technology to uncover new insights. But unless their findings are actually used to solve problems, the vast majority of benefits from research lie only with researchers themselves. +
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A private technology company is collaborating with a team of university researchers, to design and develop a VR application, that will provide therapy for individuals with social anxiety disorder. Social anxiety disorder is characterized by an overwhelming fear of social situations, so that even everyday activities (like shopping, going to work or speaking on the phone) can cause great distress.
The researchers intend to create immersive virtual environments where users can practice social interactions in realistic scenarios, such as job interviews, public speaking, or social gatherings.The VR therapy aims to help users overcome their anxiety by gradually exposing them to challenging situations in a controlled and supportive environment.
Imagine that you are being invited to be a participant in this study. What concerns might you have? Take a few minutes to put yourself in the shoes of the participant, and think about the concerns that they might have. Then check against the primary ethics issues that are identified below.
'''Feedback'''<div>
This brief scenario highlights some of the ethical issues that need to be considered when research involves a VR application. These issues can have impacts at many levels, from personal through to societal and environmental levels. In the rest of this module, we consider this along with the primary ethical issues in more detail.
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<span lang="EN-GB">Check the VERITY Protocol of Recommendations for Fostering Trust in Science (available on the [https://verityproject.eu/verity-recommendations VERITY website], [[Initiative:2f79d227-8b35-4500-bd2c-7dc6df8dbb0d|Embassy of Good Science]] and [https://zenodo.org/records/16975899 Zenodo]). Choose one recommendation that you want to implement in practice, e.g. in your daily work or in general in your organisation or projects. The main objective is to enhance '''societal trust in science,''' but you can decide on a more concrete application field related to your/your organisation’s work where the recommendation would be beneficial. Check the provided examples for such application fields.</span>
<span lang="EN-GB">· Which of the recommendations (or elements of one recommendation) do you already apply in your professional or expert routine? </span>
<span lang="EN-GB">· Can you name a context and describe a typical scenario?</span>
<span lang="EN-GB">· How do you integrate the recommendation’s objective in your daily activities to ensure an enhanced trust in science?</span> +
Data and scientific insights about new infectious agents should be quality controlled and shared as swiftly as possible with the scientific community and other stakeholders, without prejudice to the sharer. +
In this activity we explore <span lang="EN-US">planetary health through animation</span> +
The collected evidence base was used to create Evidence and Gap Map (EGM) – systematic and visual presentation of the availability of evidence for the identified challenges to ethics review. In this way, critically appraised evidence is provided in a clear and actionable format to all stakeholders. Rows represent the selected topics, and columns represent the challenges to ethics reviews. The data was visualised using Python (3.8.19) and Matplotlib library.
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This interactive training has been developed by the TRUST consortium and is optimally accessed via their website where researchers can find all of the relevant TRUST and PREPARED resources together in one central reference place: https://trustcodetraining.uclancyprus.ac.cy/v2/
It is also embedded here on the Embassy as an integral part of the PREPARED project. +
In this activity, you’ll explore the environmental impacts associated with AI technologies. Concerns include electricity use, water consumption, rare earth mining, and e-waste. Possible solutions and governance ideas are also explored. Interactive exercises to test your understanding are also included. +
Our phones and devices seem small and portable — but their environmental footprint is massive. This short article explores how technology products affect the environment throughout their lifecycle: from extraction of rare minerals to their disposal as e-waste. +
Please go through the PowerPoint presentation (summary from chapter 6 of the Coloring Connections, [https://zenodo.org/records/14258538 Verdonk et al., 2024]) +
Doing research with communities affected by climate change: Climate-conscious methodologies matrix (for students and citizen scientists) +
Please go through the PowerPoint presentation +
Read the slides carefully, focusing on the goals and methods of the two types of innovation and the differences between them. +
<div>Reproducibility and Epistemic Diversity
Reproducibility is emerging as a key priority for research stakeholders. In this policy brief, targeted at research policy - makers (e.g., funders, institutions and publishers), the team built on findings from the first year of the TIER2 project to deliver advice on creating policy that is sensitive to differences in basic conditions for knowledge production within and across fields (epistemic diversity) that crucially affect the relevance and feasibility of reproducibility.
The full policy brief on the connection between reproducbility and epistemic diversity can be found here: [https://osf.io/hxa24 OSF -TIER2_D2.5_Policy_Brief_1_Reproducibility_and_Epistemic_Diversity.pdf]
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Nature-based solutions harness the power of ecosystems to tackle a wide range of pressing global challenges. By working with natural processes rather than against them, these approaches offer effective ways to mitigate and adapt to climate change, support biodiversity, and reduce the risks of natural disasters such as floods and wildfires. At the same time, they contribute to improved human health and well-being, while addressing social issues like inequality and access to green spaces. By restoring and protecting ecosystems, nature-based solutions provide holistic, sustainable responses to the interconnected crises we face today.
Watch the video “What Are Nature-Based Solutions” and pay attention to the five benefits of nature-based solutions NbS. +
<span lang="EN-US">We will begin with an interactive book on ecofeminist principles. Click through four of the ecofeminist principles for research to learn more about their background!</span> Fill in the blanks to complete the paragraphs. +
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