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Quality of research outputs and data sets + (Use the flashcards below to test your knowledge!)
Conflicts of interest in citizen science + (Use the flashcards below to test your knowledge!)
Risks to the environment, animals, plants, and ecosystems + (Use the flashcards below to test your knowledge!)
06 - Teaching Research Ethics Tool : A Method for Analysing Cases in Research Ethics + (Usually, there are several possible courses of action. Some result in misconduct while others effectively and ethically solve the problem(s).)
Exploring Training Materials on Open Science + (Utilizing online training resources is ano … Utilizing online training resources is another way to put blended learning into practice. This method mixes traditional in-person instruction with the usage of the internet to let students create their own learning experiences. Trainees can gain from direction and engagement with a trainer while having access to flexible and interactive training options outside of the classroom by combining in-person and online training methods. The 'conventional' learning resources produced by the ROSIE project (refer to the [https://rosie-project.eu/rosie-knowledge-hub/ ROSiE Knowledge Hub]) can be utilized in conjunction with the online training resources for self-directed learning developed by ROSiE to facilitate blended learning in the classroom. Training materials on responsible open science can be found for the fields of [https://zenodo.org/records/10799656 Social Sciences], [https://zenodo.org/records/10799691 Natural Sciences], [https://zenodo.org/records/10800651 Humanities], [https://zenodo.org/records/10801617 Health and Life Sciences] and [https://zenodo.org/records/10801722 Citizen Science]. In addition, the ROSiE project created a [https://zenodo.org/records/10795319 collection of case studies] that can be use in the traditional and/or online ROSiE training. Moreover, six different modules on responsible open science can be found [[Guide:E525ee0d-0d7e-4ba5-b19b-89e4a5029b2f|here]], on the Embassy of Good Science platformE525ee0d-0d7e-4ba5-b19b-89e4a5029b2f|here]], on the Embassy of Good Science platform)
Exploring Training Materials on Open Science + (Utilizing online training resources is ano … Utilizing online training resources is another way to put blended learning into practice. This method mixes traditional in-person instruction with the usage of the internet to let students create their own learning experiences. Trainees can gain from direction and engagement with a trainer while having access to flexible and interactive training options outside of the classroom by combining in-person and online training methods. The 'conventional' learning resources produced by the ROSIE project (refer to the [https://rosie-project.eu/rosie-knowledge-hub/ ROSiE Knowledge Hub]) can be utilized in conjunction with the online training resources for self-directed learning developed by ROSiE to facilitate blended learning in the classroom. Training materials on responsible open science can be found for the fields of [https://zenodo.org/records/10799656 Social Sciences], [https://zenodo.org/records/10799691 Natural Sciences], [https://zenodo.org/records/10800651 Humanities], [https://zenodo.org/records/10801617 Health and Life Sciences] and [https://zenodo.org/records/10801722 Citizen Science]. In addition, the ROSiE project created a [https://zenodo.org/records/10795319 collection of case studies] that can be use in the traditional and/or online ROSiE training. Moreover, six different modules on responsible open science can be found [[Guide:E525ee0d-0d7e-4ba5-b19b-89e4a5029b2f|here]], on the Embassy of Good Science platformE525ee0d-0d7e-4ba5-b19b-89e4a5029b2f|here]], on the Embassy of Good Science platform)
Sertifika + (VIRT2UE sertifikasını alabilmek için 10 ar … VIRT2UE sertifikasını alabilmek için 10 araştırmacıya VIRT2UE yaklaşımı üzerine eğitim vermeniz gerekmektedir. VIRT2UE programı üç online modül ve beş katılımlı alıştırmadan oluşmaktadır. 10 araştırmacıyı 5 alıştırmanın 3’ü üzerinden eğitmeniz bizim için yeterlidir – bu, araştırma doğruluğu konusuna erdem temelli yaklaşımı öğrenmek için gerekli temeli sağlayacaktır. 10 araştırmacının eğitimi, program esnasında katılımlı alıştırmaların ‘uygulanması’ aşamasının bir parçası olarak ya da program bittikten sonra gerçekleştirilebilir. Eğitiminize katılan araştırmacılara kendilerinin de birer eğitmen olabilmesi için gerekli olan detaylı bilgiyi verebilirsiniz. Bu opsiyonel bir adımdır ve VIRT2UE sertifikasını almanız için bir koşul değildir. Eğer gerçekten araştırmacıları eğitmen olmak üzere eğitmek isterseniz, bu kişilerin İyi Bilim Elçiliği web sitesindeki VIRT2UE kılavuzunu okuduklarından ve alıştırmaları kolaylaştırıcı olarak yönetmekle ilgili deneyimlerini paylaşmak için ekstra bir oturuma katıldıklarından emin olunuz. Yüz yüze toplantıların mümkün olmaması durumunda (örneğin pandemi esnasında) bu deneyim paylaşımı yazılı bir alıştırma, akran koçluğu ve/veya video konferans ile ikame edilebilir.veya video konferans ile ikame edilebilir.)
Sertifika + (VIRT2UE sertifikasını edinmek için bir öğr … VIRT2UE sertifikasını edinmek için bir öğrenme portföyü oluşturmanız gerekmektedir. Portföyünüz içerisinde bulunması gereken dosyalar aşağıda belirtilmiştir: *Tamamlanan görevlere ilişkin tablo: https://community.embassy.science/uploads/short-url/kDU9xWHeyxdC4ER1toih5KJGE8H.docx*Alıştırmaları kolaylaştırıcı olarak yönetirken edindiğiniz deneyimleri detaylandıran yorum formları: [https://www.dropbox.com/s/1fmppqv189jxlqj/Self%20reflection%20form.pdf?dl=0 Reflection form]*10 araştırmacıyı eğittiğinizi gösteren belgeler (zoom görüşmelerinden alınmış ekran görüntüleri/ yoklama kâğıdı / katılım bildirimi)Bunların yanı sıra sertifikanızın gönderilmesini istediğiniz adresi de yazmanız gerekmektedir (ev ya da iş adresiniz olabilir)!mektedir (ev ya da iş adresiniz olabilir)!)
Erdemler ve Normlar + (Vaka net bir biçimde anlaşıldıktan sonra k … Vaka net bir biçimde anlaşıldıktan sonra katılımcılardan kendilerini vakayı sunan kişinin yerine koymalarını ve eğer sunucu yerinde kendileri olsa bu ikilemde hangi erdem(ler)in (iki tane erdem belirlenmesi yeterlidir ancak daha fazlası da mümkündür) rol oynayacağını düşünmelerini isteyin. Bunun için katılımcılara şu soruyu sorabilirsiniz:“Eğer vakayı sunan kişinin durumunda olsaydınız ve ne yapacağınıza karar vermeniz gerekseydi, sizin için bu kararı verirken hangi erdem önemli olurdu?”Lütfen belirtilecek erdemlerin ikilemin seçeneklerinden biriyle bağlantılı olması gerekmediğini unutmayın. Bu aşamada katılımcılar söz konusu durumda doğrulukla hareket edebilmek için hangi ahlaki niteliği (erdemi) hayata geçirmeleri gerektiği üzerine fikir yürütmek durumundadır. Bağlamsal olarak, katılımcılardan seçtikleri erdemi takip edecek eylem kuralının (normunun) ya da davranışın ne olduğu üzerine fikir yürütmelerini isteyin. Bunun için kendilerine şu soruları sorabilirler:“Bu durumda bu erdeme uygun davranabilmek için ne yapmam gerekir?”“Bu durumda bu erdemi hayata geçirebilmek için nasıl bir eylem kuralını takip etmem gerekir?”Lütfen aynı erdemle farklı normların ya da aynı normla farklı erdemlerin ilişkilendirilebileceğini unutmayın.lerin ilişkilendirilebileceğini unutmayın.)
Erdemler ve Normlar + (Vaka sahibi katılımcıdan, (önceden seçilmi … Vaka sahibi katılımcıdan, (önceden seçilmiş olan) vakasını anlatmasını ve vakanın neden ahlaki açıdan sorunlu olduğunu açıklamasını isteyin. Grupla birlikte, vakayı sunan katılımcının ikilemi (ikilem içerisindeki seçenekleri) formüle etmesine yardımcı olun (yani A’yı mı yapmalıyım yoksa B’yi mi?) ancak ikilemin doğru formülasyonunun ne olduğunu belirleyecek kişinin vaka sahibi olması gerektiğini unutmayın. Bu aşamada iki alternatif eylem tarzı üzerine odaklanmaya çalışın ve üçüncü bir seçenek ya da yaratıcı çözümler aramaktan kaçının. Bu, diyaloğa odaklanmaya yardımcı olacak ve insanların ikilemden bir çıkış yolu aramaya ya da hızlı bir çözüm bulmaya çalışmasını engelleyecektir. İkilemi ve vakayı tanımlayan anahtar kelimeleri yazı panosu üzerine not alın.r kelimeleri yazı panosu üzerine not alın.)
How to use the Embassy: a Starter Pack! + (Want to contribute to the Embassy of Good … Want to contribute to the Embassy of Good Science? It's simple! All you need is an ORCiD login and you can get started right away. See the video below for detailed instructions on how to use your ORCiD to log into the Embassy.<div class="video-button" data-href="https://www.youtube.com/embed/8s2hroYxT3I">ORCiD Login0:47 min</div>; 0:47 min </div>)
Ethical and Societal Foundations of Open Science + (Watch the interactive video below and complete the exercises!)
Protection of Research Participants + (Watch the interactive video below and complete the exercises!)
Rights of Citizen Scientists + (Watch the interactive video below and complete the exercises!)
Conflicts of interest in citizen science + (Watch the interactive video below and complete the exercises!)
The TRUST Code in 45 Minutes + (Watch the video below about how the TRUST code addresses these issues to make global research partnerships more equitable.)
The TRUST Code in 45 Minutes + (Watch the video below about the global moral values on which the TRUST code is based.)
The TRUST Code in 45 Minutes + (Watch the video below about what researchers and research ethics committees can do to ensure equitable research partnerships.)
The TRUST Code in 45 Minutes + (Watch the video below to learn about what funders can do to ensure equitable research partnerships.)
Debate and Dialogue + (Watch the video to get an impression of th … Watch the video to get an impression of the VIRT2UE 'Debate & Dialogue Exercise'. [[File:D&D2.png |link=https://www.youtube.com/watch?v=249umsbOIG0&list=PLabbUwyulAry4tzZ12eHl5JOJhJGiaE6k&index=4]] Debate and dialogue are two different communicative modes. The following video explores the differences between the two and helps the viewer develop a better understanding of their dynamics. These differences are also described in more detail in the theme page '[https://embassy.science/wiki/Theme:6217d06b-c907-4b09-af4e-b4c8a17b9847 dialogue versus debate'].[[File:ByVirtueof.png |link=https://www.youtube.com/watch?v=M-nI32JBOyo]][[File:ByVirtueof.png |link=https://www.youtube.com/watch?v=M-nI32JBOyo]])
Modified Dilemma Game + (Watch the video to have an impression of t … Watch the video to have an impression of the 'Modified Dilemma Game' of the VIRT2UE Train-the-Trainer program.[[File: DGE.png|link=https://www.youtube.com/watch?v=Qpq-oWPdvJQ&list=PLabbUwyulAry4tzZ12eHl5JOJhJGiaE6k&index=6]]If you are playing the app version of the game, your trainer will ask you to download the Dilemma Game [https://www.eur.nl/en/about-eur/policy-and-regulations/integrity/research-integrity/dilemma-game app] before the session and watch this [https://www.youtube.com/watch?v=SKhT7qHh9T8&t=8s video] for an introduction to using the app.&t=8s video] for an introduction to using the app.)
The TRUST Code in 45 Minutes + (Watch the videos below to learn more about the development and implementation of the San Code of Research Ethics by members of the San community.)
Translate the VIRT2UE guide into your own language + (We have made a text version of the trainin … We have made a text version of the training guide with all instructions and both the trainer and trainee perspectives included. This can be used to easily translate the guide.[https://public.3.basecamp.com/p/Kfoj9Eo6iDvgjaDj6qBjzdGh Here] you can find the word count for each part of the training guide. This can be used to obtain a quote for the translation from a translator.ote for the translation from a translator.)
01 - Value Analysis: A Method for Analysing Cases in Research Ethics and Research Integrity + (What alternatives exist?)
01 - Value Analysis: A Method for Analysing Cases in Research Ethics and Research Integrity + (What could be considered as forseeable consequences?)

01 - Value Analysis: A Method for Analysing Cases in Research Ethics and Research Integrity + (What do you think is the best thing for X to do?)

01 - Value Analysis: A Method for Analysing Cases in Research Ethics and Research Integrity + (What is the dilemma?)
01 - Value Analysis: A Method for Analysing Cases in Research Ethics and Research Integrity + (What might be the consequences of the various alternatives?)
01 - Value Analysis: A Method for Analysing Cases in Research Ethics and Research Integrity + (What might be the short- as well as the long-range consequences?)
Recognition and Networking + (When you have become a certified VIRT2UE trainer, you will receive an invitation to join the ENERI e-Community. Fill in this application and return it to the coordinators of the ENERI e-community [https://eneri.eu/e-community/ here])
Der Selbstauskunfts-Ansatz: Eine Reflexion über das Konzept des Guten in der Wissenschaft + (Während der Übung wird euch eure Trainer:i … Während der Übung wird euch eure Trainer:in anleiten, eine Gruppenreflexion über das Konzept des Guten zu führen. Um diese Reflexion zu durchzuführen, werdet ihr:1. lernen, auf welche verschiedenen Arten Forschung ''gut'' sein kann;2. in kleinen Gruppen über eure Überlegungen aus dem Selbstauskunfts-Arbeitsblatt sprechen (eine Liste von Fragen, die diese Gruppenbesprechung erleichtert, findest du unter “Praktische Tipps”);3. darüber reflektieren, wie die unterschiedlichen Arten, auf die Forschung ''gut'' sein kann, kategorisiert werden können;4. über die Inhalte des Europäischen Verhaltenskodex für Integrität in der Forschung reflektieren, indem ihr diskutiert, wie die unterschiedlichen Arten des Guten in der Forschung im Kodex erläutert werden.Die Übung wird auf den Gedanken und Ideen aufbauen, die du und die anderen Teilnehmenden auf dem Selbstauskunfts-Arbeitsblatt festgehalten habt. Eine detaillierte Beschreibung der einzelnen Schritte dieser Übung ist bei den Anweisungen für die Trainer:innen zu finden.weisungen für die Trainer:innen zu finden.)
Modified Dilemma Game + (You and your group will be asked to fill o … You and your group will be asked to fill out tables to identify the principles and practices of the European Code of Conduct for Research Integrity, and scientific virtues, that are relevant to the dilemma at stake. [[File:Modified Dilemma Game Table 1.png|thumb|'''Table 1: Which principles from European Code for Research Integrity can you identify in each dilemma?''']] [[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?''']] )
Modified Dilemma Game + (You will be asked to reflect on the proces … You will be asked to reflect on the process, and to evaluate if the learning objectives were met. You will be invited to have a brief dialogue on what you might have just learned as a group. You may be asked to seek answers to questions such as the following: *Was it easy or difficult to identify the relevant principles and virtues in the chosen dilemma?*Did this exercise help you with identifying and connecting to formally defined principles, such as those in the European Code of Conduct for Research Integrity?*Did most of the players agree or disagree with the final choice?*What were the main points of contention?*How come people disagreed (e.g. differences in experience, training, background, values, norms…)?*Was any alternative option proposed?*Did anybody change her/his mind as a result of the discussion?*What is needed in order to do the moral good in your work setting? What were the most convincing arguments used in the discussion?*On which areas do you feel there is insufficient consensus?*How to best address such future dilemmas in your daily work?address such future dilemmas in your daily work?)
Modified Dilemma Game + (You will be invited to the plenary. The trainer will ask you to reflect on your individual choices and engage in a dialogue with other participants.)
Modified Dilemma Game + (You, as a group, will be asked to present a brief summary of what has just been discussed in your group. You may assign a member as a spokesman to shortly present the results of your discussion.)
Deneyimler üzerine fikir yürütme ve alıştırmaları uygulama + (Yüz yüze alıştırmaları kolaylaştırıcı olar … Yüz yüze alıştırmaları kolaylaştırıcı olarak yönetme ve kullanma konusundaki deneyim ve uzmanlığınıza dayanarak; katılımcılarla birlikte, kendi hedef gruplarının yeterlilik düzeyi ve öğrenme ihtiyaçları, bu grupların ayrıntılı olarak tartışmak istediği şeyler ve bu konuların alıştırmalara nasıl katılabileceği üzerine tartışın. Katılımcılara İyi Bilim Elçiliği web sitesindeki eğitim materyallerine nasıl erişebileceklerini gösterin. Ayrıca, bu platformdaki toplulukla platformun tartışma sayfası üzerinden nasıl etkileşime geçebileceklerini ve eğitim materyalleri üzerinde nasıl değişiklik talep edebileceklerini de açıklayabilirsiniz.ep edebileceklerini de açıklayabilirsiniz.)
Gene Editing Case Study with Human Application + ([[File:A group of different people.jpg|cen … [[File:A group of different people.jpg|center|frameless|600x600px]]<div><div>This checklist is intended for use as a supplement to the usual ethics review process regarding matters that are mainly specific to gene editing in humans. All usual aspects of research ethics review will also need to be considered, for instance, the appropriate processing of sensitive data or the involvement of vulnerable persons, like young children. Additionally, the checklist is not exhaustive; there may be other issues pertaining to individual studies that are not included here. Nevertheless, alongside general guidelines and processes, it provides a useful starting point for ethics reviewers. ''' ''''''1. Somatic or germline gene editing'''a. Does the project aim to involve somatic or germline gene editing or both?b. If germline gene editing, does the project comply with national legislation?c. If germline gene editing, what steps have been undertaken to ensure societal acceptability?d. If somatic gene editing, could the intervention affect the germline accidentally?''' ''''''2. Novelty of gene editing in the project'''a. Does the project use a novel technique, one that has already been tried in humans, or both?b. If this is the first time it has been tested in humans, have comprehensive studies been undertaken in vitro and in animals to demonstrate proof of concept and safety?c. If the technology has already been tested in humans, what do the findings tell us about potential risks and benefits?''' ''''''3. Technological and other risks'''a. Are risks of on-target effects clearly described and addressed?b. Are risks of off-target effects clearly described and addressed?c. Are risks of genetic mosaicism clearly described and addressed?d. Are risks of immunogenicity clearly described and addressed?e. Are risks associated with the treatment process clearly described and addressed?f. Are risks of incidental findings clearly described and addressed?'''4. Enhancement and slippery slope'''a. Is the gene editing to be used purely for therapeutic purposes?b. If for therapeutic purposes, are there risks that the technology could also be applied for enhancement purposes?c. If so, how is this risk addressed?'''5. Consent'''a. How is the consent process being managed?b. How is the option to opt out of the procedure being managed?c. Is participant information sufficiently comprehensive and comprehensible so that the potential participants (or their legal representatives) will understand enough about the technology to assess the potential for harms and benefits meaningfully?d. Are the potential participants being offered adequate support and time to reach a decision?'''6. Data'''a. What measures and protections are in place to prevent the exploitation of genetic and/or other biological data, for example, for profit?b. What measures and protections are in place to prevent the misuse exploitation of genetic and/or other biological data and leading to, for example, discrimination, harassment, or marginalisation?'''7. Equity'''a. Who are the potential beneficiaries of this study?b. Will the resultant therapy or other benefits be broadly accessible?c. How are any matters of potential inequity in access addressed and justified?'''8. Study justification'''a. Is there a medical need for this study?b. Might the same objectives be achieved via less risky and/or less costly methods?[https://classroom.eneri.eu/sites/default/files/2024-10/Checklist%20for%20gene%20editing.pdf You can download the checklist here]</div></div><div></div>editing.pdf You can download the checklist here] </div></div><div></div>)
Gene Editing Case Study with Human Application + ([[File:A_child_using_building_blocks.jpeg| … [[File:A_child_using_building_blocks.jpeg|600px]]Watch the video below to learn about Hunter syndrome, its treatments and effects.[[File:Irecs_What_is_Hunter_syndrome.mp4|600px|thumb|centre]]====Video Transcript====What is Hunter syndrome? Hunter syndrome is a rare genetic disorder that primarily affects males. It is part of a group of diseases known as mucopolysaccharidoses or MPS, which are caused by the body's inability to break down certain complex sugars called glycosaminoglycans or GAGs. For people with Hunter syndrome, a lack of the enzyme iduronate-2-sulfatase or IDS, means that GAGs build up inside the body leading to a wide variety of symptoms including developmental issues, physical problems and mental decline. For example:*Physical development impacts like coarse facial features, thickened skin, enlarged tongue, and joint stiffness.*Developmental delays in children affecting motor skills, speech, and learning.*Respiratory problems with frequent respiratory infections, sleep apnoea, and other breathing difficulties.*Hearing loss.*Enlarged liver and spleen, leading to abdominal distension.*Heart problems with heart valve abnormalities and other cardiac issues.*Skeletal abnormalities like joint stiffness, short stature, and abnormal bone development.*The onset of the disease is usually between the ages of 2 and 4 years and developmental decline is usually evident between the ages of 18 and 36 months. There is currently no cure for Hunter syndrome, but treatments can help to manage the symptoms and improve quality of life. Options include: Enzyme replacement therapy (ERT). Regular, often weekly, infusions of a synthetic version of the missing enzyme can help reduce the buildup of GAGs. However, the enzyme is not able to pass the blood-brain-barrier, so this form of treatment does not help to protect against brain damage.# Symptomatic treatments for specific issues including physical therapy for joint problems, medications for respiratory and heart problems, and surgical interventions for specific complications.# Despite treatment, those with severe disease usually die in their teens. Those with a milder form of Hunter syndrome might live with more gradual deterioration in health until middle age.more gradual deterioration in health until middle age.)
Research Ethics And Integrity Basics + ([[File:Consent spelled out on blocks.jpg|a … [[File:Consent spelled out on blocks.jpg|alt=consent spelled out on blocks|center|frameless|600x600px|consent spelled out on blocks]]Informed consent is the cornerstone of ethical research with humans. It is of fundamental importance that people understand what a research project is about and provide their consent for taking part.There are seven key ingredients for valid informed consent. Match the following ingredients to their meanings.e following ingredients to their meanings.)
Research Ethics And Integrity Basics + ([[File:Faces of different people.jpg|alt=F … [[File:Faces of different people.jpg|alt=Faces of different people|center|frameless|600x600px|Faces of different people]]People can be involved in research in many different ways. For instance, they might be asked to take part in a survey, be interviewed, be observed, or participate in a clinical study. They might also be involved via use of their personal data or biological samples.Here we touch upon three of the primary ethics requirements when research involves humans:# The need for informed consent.# The need to minimise harms.# The need to respect privacy.mise harms. # The need to respect privacy.)
Research Ethics And Integrity Basics + ([[File:Handful of pills.jpg|alt=handful of … [[File:Handful of pills.jpg|alt=handful of pills|center|frameless|600x600px|handful of pills]]What does the Declaration of Helsinki say about this?Placebos should only be used:''Where there are compelling and scientifically sound reasons why it is necessary to determine efficacy or safety, and the patients who receive placebo will not be subject to additional risks of serious or irreversible harm.''But how do we know what counts as compelling and scientifically sound? And how do we know whether people who receive placebo are being put at risk?As with many ethical guidelines, there can be disagreement about what they mean in practice. In this situation, when making decisions about the design of a study, it can help to remember the Golden Rule. Imagine yourself in the shoes of someone who is being invited to participate. What would you want to know and how would you want to be treated?know and how would you want to be treated?)
Gene Editing Case Study with Human Application + ([[File:Hunter syndrome block letters.jpg|c … [[File:Hunter syndrome block letters.jpg|center|frameless|600x600px]]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.==== 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. you change your mind about your response.)
Research Ethics And Integrity Basics + ([[File:Lady justice.jpg|alt=lady justice|c … [[File:Lady justice.jpg|alt=lady justice|center|frameless|600x600px|lady justice]]So far in this module, we have only referred to ‘research ethics’ but within this broad domain, a distinction is often drawn between matters of research ethics and matters of research integrity. Both are concerned with morality in research but matters of research integrity focus specifically upon the ethics issues that are associated with trustworthiness in research. Research integrity is needed to promote trust and confidence in all aspects of the research process. In the absence of research integrity, research misconduct can lead to the dissemination of unreliable information.There are many different types of research misconduct. Match the following types to their meanings.tch the following types to their meanings.)
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.)
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?''']] )
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> the next example from clinical research. </div>)
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.)
Research Ethics And Integrity Basics + ([[File:Ring by water.jpg|alt=ring by water|center|frameless|600x600px|ring by water]])