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
3
[[File:G2.png|center|frameless|600x600px]]
<div><div>
Now that you know a little about the syndrome, imagine that you are the parent of a 12-month-old child who has been diagnosed with severe Hunter syndrome. Your child is being offered the chance to try a new experimental therapy for the disease, but the treatment is untested in humans.
Are you likely to agree to their participation? Please select a response and then check to see how others have responded.
</div></div>'''Feedback'''
Decisions about whether or not to participate in studies that are testing novel interventions can be challenging for anyone. Why not just let others take the risk in an experimental trial and wait to see what the outcomes are? For the parents or guardians of young children who are unable to consent for themselves, the decision-making is much more complex. As you work through the rest of the module, see whether you change your mind about your response.<div><div></div></div> +
[[File:Alert Signs.png|center|frameless|600x600px|]]
Biobanks can be classified according to different criteria. However, they are most often classified as population-based or disease-based biobanks. Overall, these biobank types play pivotal roles in advancing scientific understanding, improving diagnostics, and driving innovations in personalized healthcare, ultimately contributing to the evolution of precision medicine and improved patient outcomes.
In addition, virtual biobanks or virtual repositories are a relatively new management model employed in biobanking, formed of digital rather than physical repositories of biological samples and associated data. +
[[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.] +
[[File:Gene Image3.png|center|frameless|600x600px]]
Gene editing is used in many different types of research, and for many different purposes. Work through the following presentation to hear about some of the different functions.
'''Some functions of gene editing'''
Gene editing is used for many different purposes. Here are some examples:
'''Gene editing in organoids -''' Organoids are three-dimensional structures derived from stem cells that mimic the structure and function of human organs. Genome editing techniques can be applied to manipulate the genetic makeup of organoids, allowing researchers to study the effects of specific genetic mutations or modifications on organ development, function, and disease. For instance, genome editing can be used to introduce disease-relevant mutations into organoids, allowing researchers to assess drug efficacy, toxicity, and safety without the involvement of humans or animals.
'''Gene editing and embryoids -''' Embryoids, also known as ‘synthetic embryos’, are three-dimensional structures derived from stem cells that mimic the early stages of embryonic development. They serve as models for studying embryogenesis, organogenesis, and developmental disorders. Gene editing techniques can be applied to embryoids to manipulate their genetic makeup, enabling researchers to investigate the role of specific genes in embryonic development and disease. For instance, via gene editing, researchers can introduce disease-associated mutations into embryoids, allowing them to study disease mechanisms, screen potential therapies, and develop personalised treatment approaches.
'''Gene editing and xenotransplantation -''' Xenotransplantation involves the transplantation of living cells, tissues, or organs from one species to another. It holds potential as a solution to the shortage of human organs for transplantation. Gene editing technologies offer opportunities to overcome some of the barriers and challenges associated with xenotransplantation. For instance, gene editing can be used to modify the genomes of donor animals to make their organs more compatible with the recipient's immune system or to inactivate retroviruses genes thereby reducing the risk of viral transmission between species.
'''Gene editing and reproductive technologies -''' Gene editing technologies have the potential to enable precise manipulation of the genetic material in gametes (the sperm and eggs), embryos, and reproductive cells. For instance, genome editing can be used in conjunction with pregenetic diagnosis and screening techniques to screen embryos for genetic abnormalities or disease-causing mutations and correcting them before implantation during in vitro fertilization (IVF). This allows for the selection of healthy embryos for transfer, reducing the risk of transmitting genetic disorders to offspring.
[[File:Ex-tech4.png|center|frameless|600x600px]]
'''Metaverse'''<div><div><div>
The word ‘metaverse’ was first used by the American writer Neal Stephenson in a science fiction novel that was published in 1992 and entitled 'Snow Crash'. It is now used to describe a shared, persistent, real-time 3D, digital model environment where users can interact with computer-generated environments, socialise with others, and engage in various activities, similar to interactions in the physical world.
Metaverses are digital spaces and environments that users can explore, interact with, and even shape. These environments may include virtual worlds, simulations, and augmented reality experiences. Social interaction is a fundamental aspect, and the metaverse often includes features like avatars to represent users and communication tools. Users can contribute to the metaverse by creating and sharing content. This may include designing virtual spaces, creating digital objects, and developing interactive experiences. Metaverses can even have their own economy, where users buy, sell, and trade virtual assets, goods, and services. This may involve virtual currencies, digital assets, and a virtual marketplace.
</div></div></div> +
[[File:Bio3Image3.png|center|frameless|600x600px]]
===Reflection activity===
As you can see, the REC chairs have each identified some ethical issues in the research proposal, did you spot any others? Can you identify the sections of the proposal which are relevant to the chairs’ concerns? Do you think that the geographical location of the two ethics committees will impact on their perspectives? Make a few notes of the issues that you have identified before moving on. +
[[File:Bio2Image3.png|center|frameless|600x600px]]
Different models of consent offer distinct advantages and drawbacks in balancing ethical considerations and scientific advancements. We will first look at broad consent, before moving on to look at other models. For this form of consent, participants give permission for their data or biological samples to be used in a range of future research studies, rather than being limited to a single, specific study.
Jurate Lekstutiene shares her thoughts on how the broad consent model is used in biobanking. Biobanking would not be possible without support from the society, without consent from biobank participants. However, during the consent process, usually it's impossible to accurately determine which health-related research will be conducted in the future.
There are several ways how we could address this uncertainty. And the idea behind the broad consent model is that a person gives consent once, usually in writing, and then based on this consent, a biobank can collect and store samples and data for unlimited time, even after a biobank participants' death. And these samples and data can be used for extensive research involving different diseases. +
[[File:Ge3Image3.png|center|frameless|600x600px]]
Try to put yourself in the shoes of a person living in the target zone where malaria poses a great risk. You know many persons who have suffered with malaria and some who have died, including young children. You can watch this video to help you imagine what it might be like. +
[[File:Ext.Image3.png|center|frameless|600x600px]]
Aside from the processing of personal data, other privacy matters concern the use of specific applications such as telemedicine: (particularly regarding the confidentiality of medical information) the potential use of brain data, data collection for industry purposes, and issues around governmental surveillance. Users need to be informed about the types of data collected, the purposes for which it will be used, and any third parties with whom it may be shared.
Informed consent from users may be needed, to ensure that they understand and agree to the terms of data collection and usage within XR environments. Additionally, users should have control over their privacy settings and preferences, allowing them to adjust the settings, manage data sharing permissions, and delete or anonymize their data as wanted.
But user consent and control may not always be possible. For instance, AR applications in public spaces raise concerns about reasonable expectations of privacy as they process and aggregate data about a user's broad surroundings in real time. This information gathering may require special consideration for bystander privacy, especially when government and law enforcement agencies use the technology.
Regardless of the setting, XR developers and platform operators must comply with relevant privacy laws and regulations, such as the General Data Protection Regulation (GDPR) in the European Union, or the California Consumer Privacy Act (CCPA) in the United States. This includes providing users with rights to access, rectify, and delete their personal data, as well as implementing mechanisms for data portability and transparency. +
<span lang="EN-GB">Identify the main individual or organisational stakeholders (Stewards of Trust) involved in the practical application of the recommendation. These stakeholders might include those who are affected by the main issue and those who can substantially contribute to the proposed solutions. Divide between game changers (or systematic innovators) and beneficiaries under the premise that roles can constantly change. In this framework, consider also the potential collaboration between various stakeholders (ecosystematic view).</span>
<span lang="EN-GB">· Who can benefit, can be affected negatively by or can impact the scenario related to the selected recommendation?</span>
<span lang="EN-GB">· Who is involved in the practical application of the recommendation within and beyond your organisation?</span>
<span lang="EN-GB">· How do you ensure that different voices, values and interests are engaged in the innovation/problem-solving process, including hard-to-reach or marginalised stakeholders?</span> +
A fair plan for access to the benefits of pandemic research should be agreed early on in any project, in collaboration with stakeholders. +
In this step you’ll learn about the energy and resource demands of generative AI, as well as realistic strategies that reduce environmental impacts while maintaining performance. +
This final exercise helps you reflect on the role of engineers in promoting sustainability. Read each statement carefully and select True (T) or False (F). Consider environmental, social, and ethical impacts as well as the transversal skills—Perspective Taking, Systems Thinking, and Negotiation—you explored in previous activities. This activity reinforces your understanding of sustainable decision-making in engineering. +
Test your knowledge on greening labs. +
<span lang="EN-US">In this pilot, [https://schema-lab.hypatia-comp.athenarc.gr/ SCHEMA] was developed as an open-source framework, comprising SCHEMA api for programmatic execution and SCHEMA lab for a user-friendly web interface to support reproducible computational research through containerized execution, metadata capturing and experiment management. It provides a scalable environment that enables researchers to design and run reproducible computational workflows and experiments.</span> +
In this lecture, Rosemarie Bernabe addresses the ethical challenges associated with implementing Open Science in practice. The lecture provides an overview through various examples of ethical and integrity issues encountered in Open Science practice. These include the risk of spreading misinformation, the emergence of new biases related to alternative metrics, among other concerns.
'''Watch the lecture and then answer the questions.'''
'''Further reading:'''
ROSiE General Guidelines on Responsible Open Science. https://doi.org/10.5281/zenodo.10046520
UNESCO (2023). Open science outlook 1: status and trends around the world. https://doi.org/10.54677/GIIC6829
Kingsley, D. (2025, March 30). Show your working: How the ‘open science’ movement tackles scientific misconduct. The Conversation. http://theconversation.com/show-your-working-how-the-open-science-movement-tackles-scientific-misconduct-249020
Düwell, M. (2019). Open science and ethics. Ethical Theory and Moral Practice, 22(5), 1051-1053. https://doi.org/10.1007/s10677-019-10053-3
Lindemann, T., & Häberlein, L. (2023). Contours of a research ethics and integrity perspective on open science. Frontiers in Research Metrics and Analytics, 8, 1052353. https://doi.org/10.3389/frma.2023.1052353
Laine, H. (2018). Open science and codes of conduct on research integrity. Informaatiotutkimus, 37(4). https://doi.org/10.23978/inf.77414 +
<span lang="EN-US">The primer initiative from the United Kingdom Reproducibility Network was designed introduce a broad audience to important topics and aspects of open and reproducible scholarship. Each primer is a 3-to-4-page summary document which describes the open or reproducible research practice, why one might be interested in it, and how they can be applied or adopted with thorough guidance.</span>
More information on the Primers Initative can be found here: <u>[https://www.ukrn.org/primers/ <span lang="EN-US">https://www.ukrn.org/primers/</span>]</u> . +
Introduction to the evaluation of the effectiveness of Research Ethics and Integrity (REI) training +
REI training effectiveness should be approached as a system. While measuring reactions and knowledge (or learning process) is quite simple, it is also important to measure common practices and the environment (impact on the institutions). Training outcomes are influenced by many factors, not least the match between perceived needs and what the training offers, that is, the alignment between needs, intended learning outcomes, training objectives, and training implementation.
To get a holistic picture (i.e. to triangulate measurement) of the effectiveness of training it is recommended to combine different measurement tools, use them at various measurement points and align them with a common taxonomy. It is important to consider what to do with the results – what kind of changes are necessary to improve teaching and/or the environment to build a culture of integrity? +
Please watch the video carefully! The purpose of this exercise is to test your comprehension of circularity and the key processes that support it. Circularity is not only about recycling but also about refusing, reducing, reusing, repairing, refurbishing, remanufacturing, and repurposing materials—always guided by the principle of “reduce by design.” +
Doing research with communities affected by climate change: Climate-conscious methodologies matrix (for students and citizen scientists) +
The climate conscious methodology matrix helps researchers, students, and citizen scientists make ethical and responsible decisions in research. It is especially useful when working with climate-related impacts (such as floods, heatwaves, or droughts), with vulnerable or affected communities.
The tool encourages you to '''ask good questions''' throughout all stages of your research (from the early design to communication of results) and helps you adapt your methods while keeping fairness, safety, and community needs at the centre.
In a changing climate, traditional research methods may not work or may cause harm. Communities may be under stress. Researchers may face risks. By using the matrix, you can:
*'''Stay flexible''', but still do high-quality research
*'''Respect local people and ecosystems'''
*'''Build trust''' through careful planning and honest communication
*'''Support climate justice''' by including affected voices in all stages of research.
In the following steps, five card deks are presented each of them addresses a different methodological component:
* Assessment and measurement strategies
* Data evaluation and interpretation
* Ethical issues and scientific integrity
* Communication of research findings
Have a look at how to use the cards by clicking on the link below. +
