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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During pandemics, all those involved in the research cycle should strive for respectful engagement with each other in the spirit of equitable and collaborative problem-solving +
Members of [[Main Page|The Embassy of Good Science]] have developed a set of scenarios for educational purposes and to stimulate strategic thinking about issues in research ethics and research integrity.
The scenarios are designed to help researchers and other entities to become better acquainted with The European Code of Conduct for Research Integrity as a regulatory document that articulates the standards of good research practice.
This [https://doi.org/10.5281/zenodo.4063648 scenario] presents a hypothetical narrative concerning data practices and data management and their links with research ethics and research integrity.
It focuses on issues regarding:
*Data protection and consent;
*FAIR principles for data management and stewardship;
*Data copyright and data citation;
*Data for personal research use.
=====Your task is to:=====
#Read the narrative (Issue 1–3) and questions for researchers related to the presented issues
#Share your thoughts on research integrity issues raised by a narrative in a forum (at least one or two sentences per question; approx. 50 words)
#Discuss the best research practice with other participants (use 'Discuss this topic' button; optional)
[1] Péter Kakuk. (2020). Data Practices, Data Management and FAIR Principles: An Educational Scenario by the EnTIRE project. Zenodo. https://doi.org/10.5281/zenodo.4063648 +
Over the past two decades, open-access publishing has rapidly grown into a global industry, making scholarly publications readily available to researchers, policymakers, and the general public.
While this has generally been seen as a positive development, the predominant “Gold” open access route has also given rise to unforeseen challenges. The rise of open-access publishing, which often involves authors paying fees to make their work freely available, has unfortunately provided a fertile ground for predatory publishers.
==== What are predatory journals? ====
Predatory journals and their publishers are “entities that prioritise self-interest at the expense of scholarship and are characterised by false or misleading information, deviation from best editorial and publication practices, a lack of transparency, and/or the use of aggressive and indiscriminate solicitation practices”.
Many researchers are duped into choosing to publish with predatory journals because they are simply unaware of the difference between bogus and quality open-access journals. Early career researchers are at particular risk, as they may feel great pressure to publish but lack experience. Equally, these journals have disproportionately negative effects on researchers from low- and middle-income countries, who may not have the resources to identify those outlets and/or are seeking more affordable ways to publish.
Falling prey to predatory publishers can damage a researcher's reputation, waste valuable resources, and contribute to the dissemination of potentially unreliable scientific information.
==== Identifying and promoting quality open-access journals ====
There is currently no centralized global or European authentication of academic publishers and journals to certify that they meet the fundamental requirements of professionalism and financial transparency. Some specific recommendations of the ALLELA for researchers can be found below:
* Searching the databases listed in the [https://doaj.org/ Directory of Open Access Journals] (DOAJ) (empowered by the global science community), and Web of Science (WoS) can be starting points for finding open access journals that follow good editorial practices. Additionally, [https://cabells.com/solutions/predatory-reports Cabells] provides a subscription service featuring a database of deceptive and predatory journals.
* There are also several national and institutional resources that regularly evaluate and categorise scientific journals and publishers based on their editorial and publication standards. These can often also be accessed by external researchers, and could be extended and adopted for regional or European use.
* The [https://thinkchecksubmit.org/ Think-Check-Submit] initiative provides tools to help researchers identify trusted journals in which to publish their research. The [https://www.coalition-s.org/journal-comparison-service/ Journal Comparison Service] by cOAlition S provides a platform that improves price transparency for researchers, libraries, and funding organisations.
* Most academic libraries can advise researchers; they are encouraged to follow evidence-based characteristics of potential predatory journals and IAP-recommended markers for fraudulent, deceptive, or unacceptable journals.
* In general, authors are recommended to keep full control over any published work by retaining their intellectual property rights. By doing so, authors will always be able to deposit a copy of the Author Accepted Manuscript (AAM) in a repository of their choice, and it allows them to re-use figures and tables from the publication in subsequent presentations or other works without having to seek permission from the publisher.
Further reading:
There are various sources of information on predatory publishing, e.g., [https://zenodo.org/records/3738003 Predatory journals and open access: predators in the world of scientific publishing], where you can obtain additional information.
For an alternative source of information that goes into more detail you may want to peak in [https://prism.ucalgary.ca/bitstreams/3c1b1ccb-e82b-49c3-96e5-7d4f3fcb9352/download Avoiding Predatory Journals and QuestionableConferences: A Resource Guide] (Eaton, 2018).
[1] ALLELA. (2023). ALLEA statement on curbing predatory practices in open access scholarly publishing. https://doi.org/10.26356/PREDATORYPUBLISHING
[2] Grudniewicz et al. (2019). “Predatory journals: no definition, no defence”. Nature 576, 210-212. https://doi.org/10.1038/d41586-019-03759-y
'''Questions to consider:'''
• Who is involved in defining research questions, methods, or priorities?
• Are we meaningfully consulting affected groups and individuals during the design and implementation of the research?
• Are participation processes designed so that they enable affected groups to realistically take part?
'''Example :''' A consortium designs an environmental monitoring study without consulting local communities. Procedural justice invites reflection on whether earlier or more systematic engagement could improve both inclusiveness and research quality. +
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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. +
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'''Accountability'''
In the context of research governance, accountability entails researchers and research institutions taking responsibility for the ethical conduct, integrity, and outcomes of their research activities. This includes adhering to regulatory requirements, ethical guidelines, and best practices in research methodology. Accountability in research governance also involves transparency in reporting findings, acknowledging conflicts of interest, and ensuring that research benefits society while minimising potential harm.
'''Ethics dumping'''
Ethics dumping is a term used to describe situations when researchers from privileged settings offshore unethical research to lower income settings. It can happen on purpose, but also due to lack of awareness and cultural misunderstandings. Probably the best-known type of ethics dumping is the application of double standards, where exploitative practises that are not accepted in a high-income setting are used in a lower income setting.
'''Methodology'''
Methodology refers to the systematic methods or procedures used in a particular field of study or discipline. It encompasses the principles, techniques, and rules for conducting research or investigation within that field. It can be regarded as a framework for planning, executing, and evaluating research activities.
'''Methods'''
In research, the term ‘methods’ refers to the specific tools or processes that are used for data collection or analysis. For instance, methods might take the form of a survey, interviews or experiments.
'''Trustworthiness'''
Trustworthiness in the research context refers to the credibility, reliability, and integrity of the research process and its outcomes. It encompasses adherence to ethical standards, transparency in methods and reporting, consistency in findings, and the avoidance of biases or conflicts of interest. Trustworthiness is essential for establishing confidence in research results among peers, stakeholders, and the broader community.
'''Stewardship'''
In the research context, stewardship involves the ethical and responsible management of research resources, including funding, data, facilities, and intellectual property. It entails ensuring that these resources are used efficiently, transparently, and in accordance with established guidelines and ethical standards. Stewardship in research also involves promoting the integrity of the research process, fostering collaboration, and safeguarding the interests of participants, stakeholders, and the broader community.
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<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> +
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In navigating the entry of new actors into the health domain, policymakers, healthcare providers, and technology companies must work together to ensure that innovations align with patient needs, adhere to ethical standards, and contribute to the overall improvement of healthcare delivery. Balancing innovation with regulatory oversight and patient protection remains a key challenge in this evolving landscape. +
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Do you know what is meant by personal data? Look at the following options and identify those that are personal data. +
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UK Genetic Technology (Precision Breeding) Act 2023: https://www.legislation.gov.uk/ukpga/2023/6/contents/enacted
Association for Responsible Research and Innovation in Genome Editing (ARRIGE): https://www.arrige.org/
European Parliament, Directorate-General for Parliamentary Research Services, A Nordberg, et L Antunes. Genome editing in humans – A survey of law, regulation and governance principles. European Parliament, 2022. https://doi.org/10.2861/07058.
The Nuffield Council on Bioethics ethical review on genome editing: this document gives a good overview of the technique of gene editing as well as the ethical and legal questions surrounding it. From the examples given, there could be case studies being developed [https://www.nuffieldbioethics.org/assets/pdfs/Genome-editing-an-ethical-review.pdf https://www.nuffieldbioethics.org/assets/pdfs/Genome-editing-an-ethical-] [https://www.nuffieldbioethics.org/assets/pdfs/Genome-editing-an-ethical-review.pdf review.pdf]
The Nuffield Council on Bioethics social and ethical review on genome editing and human reproduction: very helpful background information on the topic of gene editing which can be used for designing case studies or other kinds of training modules [https://www.nuffieldbioethics.org/assets/pdfs/Genome-editing-and-human-reproduction-report.pdf https://www.nuffieldbioethics.org/assets/pdfs/Genome-] [https://www.nuffieldbioethics.org/assets/pdfs/Genome-editing-and-human-reproduction-report.pdf editing-and-human-reproduction-report.pdf]
A case study from The Royal Society about gene editing in human embryos: [https://royalsociety.org/-/media/policy/projects/gene-tech/case-studies-keywords/case-study-genome-edited-human-embryos.pdf https://royalsociety.org/-/media/policy/projects/gene-tech/case-studies-] [https://royalsociety.org/-/media/policy/projects/gene-tech/case-studies-keywords/case-study-genome-edited-human-embryos.pdf keywords/case-study-genome-edited-human-embryos.pdf]
A case study from The Royal Society about non-heritable human genome editing: [https://royalsociety.org/-/media/policy/projects/gene-tech/case-studies-keywords/case-study-non-heritable-genome-editing.pdf https://royalsociety.org/-/media/policy/projects/gene-tech/case-studies-] [https://royalsociety.org/-/media/policy/projects/gene-tech/case-studies-keywords/case-study-non-heritable-genome-editing.pdf keywords/case-study-non-heritable-genome-editing.pdf]
An overview of success stories related to gene editing and can be used for real life examples for what gene editing can and can’t do: [https://media.nature.com/original/magazine-assets/d41586-021-02737-7/d41586-021-02737-7.pdf https://media.nature.com/original/magazine-assets/d41586-021-02737-] [https://media.nature.com/original/magazine-assets/d41586-021-02737-7/d41586-021-02737-7.pdf 7/d41586-021-02737-7.pdf]
This article reflects on the fundamental ethical dilemma of using gene drives in mosquitoes and its possible effects on people in Africa: [https://www.sciencenews.org/article/gene-drives-mosquito-malaria-crispr-africa-public-outreach https://www.sciencenews.org/article/gene-drives-mosquito-malaria-crispr-] [https://www.sciencenews.org/article/gene-drives-mosquito-malaria-crispr-africa-public-outreach africa-public-outreach]
This article discusses the events involving the birth of the first human babies who were genetically edited by a Chinese researcher to be resistant to HIV. Despite the researcher's intention to protect the babies from HIV, his actions were against the law according to the Chinese government and the scientific community. As a result, he was imprisoned. Nevertheless, the babies are currently alive: https://www.science.org/content/article/did-crispr-help-or-harm-first-ever-gene-edited-babies
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'''Ethics review processes for biobanking'''
Ethics review processes for biobanking vary across the world. Looking at European countries as an example of the variations, we see that in many countries, independent ethics review bodies, typically RECs, evaluate the ethical acceptability of research projects that intend to use biobank resources. In some countries, RECs also review the establishment of a biobank itself. In other countries, REC approval for biobank research is only necessary in exceptional cases. For example, in the UK, biobanks may obtain general ethics approval to conduct a broad range of biobank research, thereby relieving researchers of the need to seek separate ethics approval. In Finland, REC permission is required to set up a biobank, and the evaluation of biobank research is typically performed by the directors of the biobank, with REC approval necessary only under specific circumstances.
It is also worth noting that in some countries, RECs are responsible for additional obligations, such as allowing biobank controllers to identify and contact gene donors to get their written consent for renewing, supplementing or verifying a description of their state of health. They might also be responsible for authorising the transfer of biobanked samples and health-related data to other biobanks established in the same country or abroad.
Different ethics governance practices across different biobanks in Europe also reflect different models of oversight recommended at the international level. For instance, the [https://www.oecd.org/health/biotech/guidelines-for-human-biobanks-and-genetic-research-databases.htm OECD guidelines for Human Biobanks and Genetic Research Databases] recommend that RECs should assess biobank research with a specific focus on determining whether the purpose of the planned biobank research study falls within the scope of previously given consent or whether it requires (re)consent. Meanwhile, the [https://www.wma.net/policies-post/wma-declaration-of-taipei-on-ethical-considerations-regarding-health-databases-and-biobanks/ WMA Taipei Declaration] expands the scope of ethical oversight by recommending that RECs should evaluate not only biobank research, but also approve the establishment of a biobank and monitor ongoing biobank activities.
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'''Allele''': One of two or more versions of a gene. Organisms inherit one allele from each parent for every gene. Different alleles can produce variations in traits, such as eye colour or disease susceptibility.
'''Cas9 (CRISPR-associated protein 9):''' An enzyme that acts like molecular scissors, capable of cutting DNA at a specific location, allowing for targeted gene edits.
'''CRISPR-Cas9:''' A gene-editing tool that uses a protein called Cas9 and a guide RNA to cut DNA at specific locations, allowing for targeted modifications.
'''CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats):''' A sequence of DNA found in the genomes of bacteria and archaea that provides a genetic record of viral infections, used as the basis for gene editing technology.
'''Dominant trait:''' A trait that is expressed when at least one copy of the dominant allele is present.
'''Ex vivo editing:''' A gene-editing technique where cells are modified outside the body (in a lab) and then reintroduced into the patient.
'''Gene:''' A segment of DNA that contains the instructions for producing a specific protein or trait.
'''Gene drive:''' A genetic mechanism that increases the likelihood of a particular gene being inherited by offspring, often used to spread specific traits through a population.
'''Gene editing:''' The process of making precise changes to the DNA of an organism, either by adding, deleting, or altering genetic material.
'''Genome:''' The complete set of genetic material (DNA) in an organism, including all its genes.
'''Genotype:''' The genetic constitution of an organism, referring to the specific alleles an individual carries.
'''Gene therapy:''' A medical approach that involves altering genes within a patient's cells to treat or prevent disease, often using tools like CRISPR-Cas9.
'''Germline editing:''' Gene editing of reproductive cells or embryos, resulting in changes that can be passed on to future generations.
'''Guide RNA (gRNA):''' A short RNA sequence that directs the Cas9 enzyme to the specific part of the genome that needs editing by matching its complementary DNA sequence.
'''Horizontal gene transfer:''' The movement of genetic material between organisms in a manner other than traditional reproduction.
'''In vivo editing:''' A gene-editing technique where the CRISPR-Cas9 system is delivered directly into the body to modify cells within the patient.
'''Knock-in:''' A genetic modification where new genetic material is inserted into a specific location in the genome using CRISPR-Cas9.
'''Knockout:''' A genetic modification where a specific gene is completely inactivated or "knocked out" to study its function or disable a harmful gene.
'''Mendelian Genetics:''' The branch of genetics that studies how traits are inherited according to the principles discovered by Gregor Mendel through his work on pea plants.
'''Mosaicism:''' If not all cells may receive the intended modification, this can lead to mosaicism whereby some cells carry the edited gene, while others do not. This is more commons when gene editing is done at the embryonic stage or in early development.
'''Mutation:''' A change in the DNA sequence of a gene, which can alter the function of the gene or result in a new trait.
'''Off-target effects:''' Unintended modifications made by CRISPR-Cas9 at sites other than the intended target, which can result in unwanted mutations.
'''On-target effects:''' Even at the intended target site, gene editing can result in unintended changes. For example, small insertions or deletions that can alter the function of nearby genes or regulatory elements.
'''Phenotype:''' The observable characteristics or traits of an organism, which are determined by its genetic makeup (genotype) and environmental factors.
'''Recessive trait:''' A trait that is expressed only when two copies of the recessive allele are present.
'''Somatic cells:''' All cells in the body except for sperm and egg cells. Somatic cell gene editing: Gene editing performed on somatic (non-reproductive) cells, affecting only the individual and not their offspring.
'''Targeted mutation:''' A deliberate alteration in a specific gene sequence to study gene function or produce a desired trait.
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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? +
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In the following video there will be pop up information, be sure to click on the video to continue.
There are undoubtedly times when a blanket approach to protection is warranted for certain entire groups, like babies and young children, or for adults with severe cognitive impairment. However, this protectionist stance is often applied to entire groups of people who do have the capacity to provide consent (like impoverished persons, for example). So why does this happen? To answer this question, it is helpful to remember that research ethics codes originated in the biomedical domain, and were intended to prevent the kinds of abuses that occurred in the Tuskegee Syphilis Study, whereby people might be subjected to a high risk of harm in research, without their knowledge or consent. The resolve to protect people from exploitation in research runs deep, but we need to be careful not to patronise participants by well-meaning exclusions that serve to perpetuate systemic inequalities and disadvantages. +
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'''Video Transcript'''
Access to metaverses requires resources that are not available to most people, including a steady electrical supply, high speed internet connection, a headset and / or haptic devices, for an immersive experience, as well as a powerful computer. Over time, the costs of XR devices and hardware may come down, but it is hard to imagine a time when they will be accessible to all.
Aside from the costs, there are inclusivity issues related to use by people with disabilities. For instance, the design of VR headsets can inadvertently exclude individuals with specific disabilities, limiting their participation in metaverses. Current commercially available XR technology may only be comfortable to wear for about 50–60% of the population. How can virtual environments and the technical means of navigating them be adapted to the needs of visually or hearing-impaired persons? Addressing the needs of individuals with disabilities is crucial for creating an accessible and welcoming metaverse, but industries might perceive the market of people with disabilities as less lucrative, potentially leading to a lack of tailored offerings.
The use of immersive technologies within the workplace is also a grey area. There has been increased use of immersive technologies in workspaces, and attention needs to be placed on the impact, either positive or negative, on these spaces. If the technology is not inclusive of all workers, then this raises ethical concerns. +
Researchers must always use respectful language when communicating through the press or the media, even when under pressure +
In this lecture, Søren Holm addresses problematic research practices that vary in severity from definite research misconduct to questionable practices. The initial segment of the lecture examines malpractice related to the provision of open data. The subsequent segment focuses on the misuse of open data and discusses issues concerning open code, materials, and open publication.
'''Watch the lecture and then answer the questions.'''
'''Further reading:'''
The Embassy of Good Science: “[[Theme:28a0859b-9e52-4af4-97f0-b0f8eeac1f1c#Research%20misconduct|Research Misconduct]]”
Flanagin, A., Fontanarosa, P. B., & Bauchner, H. (2020). Preprints Involving Medical Research—Do the Benefits Outweigh the Challenges? JAMA, 324(18), 1840–1843. https://doi.org/10.1001/jama.2020.20674 +
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! +
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%2F3puN6rfFYS&data=05%7C02%7CKChatfield%40uclan.ac.uk%7Cde983f54bcc64d66a02908dcd0b50ccd%7Cebf69982036b4cc4b2027aeb194c5065%7C0%7C0%7C638614723283142461%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=noGJNHMbkeQtmNkEzmf2zx2ua3sxX%2F7ta9F8pmckrSQ%3D&reserved=0 https://forms.office.com/e/3puN6rfFYS]
Thank you! +
Think. Check. Submit. helps researchers identify trusted journals and publishers for their research. Through a range of tools and practical resources, this international cross-sector initiative aims to educate researchers, promote integrity, and build trust in credible research and publications.
The 3-step approach encourages academics to ‘Think’ about the problem posed by predatory or substandard conferences, ‘Check’ the conference against a set of criteria designed to highlight attributes of good and bad quality conferences, and ‘Attend’ only if the conference adheres to the criteria consistent with a legitimate conference.
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====Watch a video: Assessing the trustworthiness of a journal or publisher====
Have you done your research and now you are ready to publish? Ensuring the trustworthiness of a journal or publisher is essential for researchers when sharing their work with the world. This video outlines some key steps and considerations to help researchers assess whether a journal or publisher is suitable for their research.
====Think. Check. Submit. checklist====
The Think. Check. Submit. checklist is a tool that will help you discover what you need to know when assessing whether or not a publisher is suitable for your research.
Follow the [https://thinkchecksubmit.org/books-and-chapters/ Book & Chapters] or [https://thinkchecksubmit.org/journals/ Journals] checklist to make sure you choose trusted journals and publishers for your research.
[1] Think. Check. Submit. (2024). https://thinkchecksubmit.org/ +
