T 1.6 | Ethics Handbook D 1.3

1 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 DELIVERABLE 1.3 AUTHORS Rosário Oliveira – ICS ULisboa in collaboration with the Ethics Advisory Committee 28.04.2023 ETHICS HANDBOOK Ref. Ares(2024)4358829 - 17/06/2024 2 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 PROJECT ACRONYM: FoodCLIC PROJECT NUMBER: 101060717 WORK PACKAGE NUMBER AND TITLE: WP1 Developing methodological, training and monitoring frameworks LEAD BENEFICIARY: ICS - ULisboa WORK PACKAGE LEADER: Stichting VU RELEVANT TASK: T1.6 DISSEMINATION LEVEL: Public DUE DATE (MONTH): 28.04.2023 (M8) VERSION: Updated version after review RP1 17.06.2024 3 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 EXECUTIVE SUMMARY Deliverable “D1.3 Ethics Handbook” describes the FoodCLIC ethical guidelines for dealing with stakeholders and the personal data gathered through their participation in the project initiatives, assuring compliance with the ethical values and principles of scientific research according to their human rights. It describes the procedures that must be followed for the protection of the ethical rights of all involved participants to guarantee that the confidentiality of the provided information and the identity of the participants involved is maintained. 4 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 TABLE OF CONTENTS 1. INTRODUCTION ................................................................................................................................ 7 2. THE ETHICS ADVISORY COMMITTEE ESTABLISHMENT AND FUNCTION ..................................... 9 3. PRACTICAL AND ETHICAL DILEMMAS IN COLLABORATIVE RESEARCH.....................................11 3.1 General Stakeholders ...............................................................................................................11 3.2 The vulnerability perspective ....................................................................................................12 3.3 The research perspective .........................................................................................................15 4. ETHICAL GUIDELINES ....................................................................................................................16 4.1 General framework ...................................................................................................................16 4.2 Informed Consent/Informed Assent ........................................................................................17 4.3 Individual Data Protection and Privacy ....................................................................................19 5. COMMUNICATION..........................................................................................................................21 6. RELEVANT REGULATIONS AND SCIENTIFIC STANDARDS............................................................23 7. REFERENCES ..................................................................................................................................25 ANNEXES ...........................................................................................................................................26 ANNEX I - PROJECT INFORMATION SHEET ...............................................................................27 ANNEX II - CERTIFICATE OF CONSENT FOR ADULTS.................................................................30 ANNEX III - CERTIFICATE OF CONSENT FOR PARENTS/GUARDIANS .......................................31 ANNEX IV - CERTIFICATE OF ASSENT FOR CHILDREN ..............................................................32 ANNEX V - CONFIDENTIALITY AGREEMENT..............................................................................33 ANNEX VI – MEDIA WAIVER .......................................................................................................34 ANNEX VII – SURVEY..................................................................................................................34 5 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 HISTORY OF CHANGES Number Page Change 1 8,9 The EAC comprises a chair and two representatives of the consortium. In the first year of the project EAC membership was as follow: Chair - Professor Maria do Céu Patrão Neves, as external ethics expert Consortium member 1 – Dr. Pim Klaassen, as VU representative and ethics expert Consortium member 2 – Dr. Monika Rut, as ICLEI representative. Due to several impediments of those members, in the second year a renomination process took place and the new members are now performing their roles and responsibilities on advising and supporting the consortium: Chair - Emer. Prof. Dr. Tjard de Cock Buning, as external expert Consortium member 1 – Dr. Osvaldo Santos, as consortium representative (FM-ULisboa) Consortium member 2 – MsC Anna Bruen, as consortium representative (ICLEI-Europe) 2 12 To accomplish with gender balance when dealing with vulnerable communities we must consider the great variations on the social and cultural context in what concerns the role of women and their main responsibility for the preparation of food. However, most research on food production that incorporates the gender dimension is concentrated on the Global South, where woman and girls eat the least, especially in hard times. Often this research explores how inequalities in power relations between men and women regarding property rights to land, education, access to technical equipment, fertilizers and types of seeds determine the production, trade and consumption of food. Typically, this research is initiated by the United Nations with the aim of improving woman farmers’ access to resources, thereby helping to end hunger. In the Global North, gender-differentiated statistics about properties in fisheries, land ownership, type of crops being cultivated, etc. are available. Gender is also one of several variables in national diet and nutrition surveys. Genderdifferentiated statistics may form the basis for further gender analysis of food production and consumption. Possible research questions may be: • What are the causes of the strong gender imbalance in the production and consumption of food? • What are the impacts of the gendered division of labor within the bioeconomy, including in agriculture and fisheries, on local communities? What can be done to reduce the gender imbalance? • What is the significance of gender in the transition process towards a sustainable bioeconomy? What can be done to make people reduce food waste and eat less meat? 6 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 These questions may refer to the consequences of our research and interventions on the real world disbalance of women in, e.g. decision bodies and roles in the food chain. Nevertheless, despite the FoodCLIC project contains indeed an explicit emancipation goal, but not specified per gender, the intervention methods (learning circles) will be good opportunities to increase awareness and empowerment. In one situation it will g ive a mayor, teachers, retailers inspiration to reduce food insecurity. The gender awareness is structurally built in the need assessment analysis and will be more prominent in one city context than in another city context. When regarded as relevant by the participants it will be taken up to co-creation solutions. 3 13 Regarding the eventual conflict of interest, the applied methodology of reflexive monitoring and action starts by mapping the stakeholders related to food insecurity in the local context, considering that stakeholders of the food system are free to be in favor or against the system transformation. A relevant achievement is thus to build on win-win options together. For this to happen respect for all stakeholders is the ethical value at stake. Conflict of interest will be explored explicitly. Therefore, in vision of the methodology the worst case is “agree or disagree” which is respectful and hardly an ethical problem. To avoid this problem participants will be previously informed about the list of attendees, so they may decide whether their presence in the participatory sessions is comfortable and adequate regarding eventual conflict of interest. 7 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 1. INTRODUCTION The FoodCLIC project aims to build strong science-policy-practices interfaces in order to develop evidence-based and integrated food policies and render planning frameworks food sensitive, creating more progressive and resilient urban food environments wich empower citizens, particularly from deprived and vulnerable groups, to access, afford and choose healthier and more sustainable foods. The backbone of such interfaces are Food Policy Networks, which will manage real-world experimentals in eight Living Labs (LL) through learning-in-action. This deliverable, ‘D1.3: Ethics handbook’, identifies the ethical questions that have to be taken into consideration for the FoodCLIC project implementation. Its aim is to provide guidelines to be followed by the LL teams taking part in different participatory activities when dealing with stakeholders and/or participants’ data, either in practical or research terms, and furnishes the layout of the necessary templates for obtaining informed consent from FoodCLIC participants. This handbook will be particularly attentive to the inclusion of food deprived and vulnerable groups and gender aspects. It presents preliminary guidelines for the LL to set up their participatory initiatives and data collection process. To identify the ethical issues affecting (or likely to affect) the LL teams when approaching the stakeholders, LL teams have filled in a survey and the results have been considered in the ethical procedures presented in the Handbook. However, as far as their initiatives will go deeper, new questions and needs may arise, and answers will be supported by the Ethical Advisory Commitee (EAC). Thus, the Handbook will evolve during the project period to cover as much as possible all the ethical needs. At the end of the project the way that ethical challenges have been addressed and overcome will be synthetised and reported (D1.8). After the introduction, we start in chapter 2 by explaining how the EAC has been established and what its functions are. In chapter 3, the foreseen ethical dilemmas are described based on the survey responded by the LL teams, including the vulnerability and research perspectives. Chapter 4 gives attention to the ethical guidelines, especially in what concerns individual data protection, privacy and where the Informed Consent and Informed Assent are introduced and complemented by several annexes: • a first draft of the project information sheet; • the different documents related to participant consent when taking part in the different FoodCLIC activities and subsequently to the collection of their data; • templates for the data exchange form and the confidentiality agreement, to support the exchange of primary research data which may contain personal data of the participants amongst the FOODCLIC project partners, in articulation with the Data Management Plan (T1.5; D1.2) 8 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 Chapter 5 aims to point out the most relevant aspects of communication in the sense of approaching the stakeholders and in chapter 6 relevant regulations and scientific standards are provided to be followed by the LL teams. 9 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 2. THE ETHICS ADVISORY COMMITTEE ESTABLISHMENT AND FUNCTION The FoodCLIC Ethics Advisory Committee (EAC) has been established through a process that complies with the ‘Ethics Advisors/Ethics Advisory Boards in EC-funded Projects’ of the European Commission (2012)1, including the procedures to nominate its members, the definition of their competences and functioning. This process is described in a document structured for the FoodCLIC’s Milestone 1. The EC perceives ‘ethics’ as including questions of legal and regulatory compliance as well as a branch of philosophy. It is part of a process of ‘governance’. In this vein, the EC document “A comprehensive strategy on how to minimize research misconduct and the potential misuse of research in EU-funded research” asserts that ethics is a “key oversight mechanism” to ensure that EU-funded research is not misused. In FOODCLIC, we hence see ethics as a central element of research that warrants that commonly shared ethical principles are not violated and that, generally speaking, all research actions are undertaken with appropriate sensitivity to the moral dimensions of research processes and products. In general, within the FoodCLIC project, we consider the EAC as a group of (ethics) experts giving advice to researchers, research groups or project consortium partners in the context of this EUfunded project. The aim of the EAC is to build a relationship between the research process and ethics that is collaborative and constructive (rather than negative and inhibitive). Furthermore, the work of the EAC experts is to facilitate, build upon and complement existing oversight regimes by competent ethical and legal authorities. This committee will provide input for all research protocols and coordinate the review process. The EAC will particularly be attentive to the inclusion of deprived and vulnerable groups and gender aspects. The EAC meets whenever questions or doubts emerge that deserve attention from the EAC, but never more often than once a month. However, the committee is always available to provide tailormade support along the project and we ensure that we come back to people's questions within a month, e.g. during the Living Lab support meetings, in case any ethical dilemmas arise that partners do not immediately know how to handle after having consulted the current Ethical guidance. The EAC comprises a chair and two representatives of the consortium. In the first year of the project EAC membership was as follow: • Chair - Professor Maria do Céu Patrão Neves, as external ethics expert • Consortium member 1 – Dr. Pim Klaassen, as VU representative and ethics expert 1 https://ec.europa.eu/research/participants/data/ref/h2020/other/hi/ethics-guide-advisors_en.pdf 16 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 4. ETHICAL GUIDELINES Ethical aspects are an important part of research and have to be reflected on throughout the entire research process, starting from the conceptual phase to the publication and dissemination of the research findings. The European Commission defines ethics as a key dimension of Responsible Research and Innovation (RRI) as follows: “European society is based on shared values. In order to adequately respond to societal challenges, research and innovation must respect fundamental rights and the highest ethical standards. Beyond the mandatory legal aspects, this aims to ensure increased societal relevance and acceptability of research and innovation outcomes. Ethics should not be perceived as a constraint to research and innovation, but rather as a way of ensuring high quality results”. In this chapter it presented the general ethical framework the FoodCLIC project is following and the forms to be used by the LL teams when promoting participatory initiatives. 4.1 GENERAL FRAMEWORK The FoodCLIC consortium aims to ensure the highest standards of integrity and professionalism in the conduct of research. The consortium is committed to address all potential ethical issues that may arise during the project and has therefore defined a set of procedures for dealing with related questions in the most responsible way. Ethics should not be perceived as a burden, but rather, as a guiding principle, which helps to ensure high quality of research and the justification of associated decisions. The consortium will focus specifically on the following three main ethical aspects defined by the European Commission (2015): • research integrity and good research practice; • research ethics for the protection of research objects; • societal relevance and ethical acceptability of research and innovation outcomes. For this reason, one of the most important tasks in the project is to design rigorous and robust ethical guidance that, wherever and whenever pertinent, will protect the identity and privacy of the involved participants. This will concretely be done by: • providing an information sheet about the project’s objectives; • communicating benefits and risks to the involved participants; • getting consent for processing private data for taking pictures, recording videos, writing reports and presenting statistics; • managing data responsibly (please, see FoodCLIC’s D1.2 - Data Management Plan). 17 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 Although Data Management is not covered in the current Ethics Handbook, there are some interconnections and overlaps that deserve to be considered. We consider the FoodCLIC research team will collect data from individuals in a number of ways through virtual platforms as well as inperson or on-site. Thus, we expect at least the following methods for data collection will be used: • face-to-face or online interviews and workshops; • automatically logged user data from online platforms, such as MS Teams (Sharepoint) and Zenodo. Data collected through these different methods are essential for the assessment of the project’s outputs, outcomes and impact. Data storage (location, duration), findability, accessibility, interoperability and reusability are all detailed in deliverable D1.2 – Data Management Plan. FoodCLIC also supports social justice and inclusion, by following an inclusive approach, where also the elderly and visually impaired people are enabled to participate in the project’s activities. This is specifically accomplished by ensuring that the tasks for the citizen scientists within the eight FOODCLIC demonstrator cases include activities that are accessible to different target groups, deserving special attention to vulnerable groups. In the social sciences, the concept of “vulnerability” has been used to define people who lack the capacity to make decisions, due to physiological or psychological factors or status inequalities, and/or people who experience impairing conditions that might constrain or diminish their physical and cognitive autonomy. This category includes groups that are traditionally marginalized, institutionalized groups, groups without the mental capacity to consent, groups that engage in risky behavior or have contact with/live in environments considered dangerous or impoverished (Hilário and Augusto, 2020). “Vulnerability” is to be contrasted with the concept of “sensitive topics”, which has been used to describe themes that might be considered intrusive and/or harmful for research subjects and/or for the researcher. Although sensitivity is relational — i.e., is negotiated and shared in the relationship with others — it is possible to anticipate sensitivity in certain topics, based on past experiences, and on a kind of established and shared knowledge around certain themes and subjects that might lead to negative emotions. Generally speaking, these topics concern issues that are considered taboo or stigmatizing, issues related to illegal or criminal practices and personal issues that can cause discomfort. There is a very close relationship between the concept of vulnerability and sensitivity, since the research on groups considered vulnerable can lead to addressing topics considered sensitive, and vice versa. 4.2 INFORMED CONSENT/INFORMED ASSENT For the purpose of protecting the data and private information an informed consent needs to be guarenteed in all the initiatives undertaken by the FoodCLIC project that involve any kind of stakeholder or participant. An informed consent is the process through which a researcher obtains, 18 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 as well as maintains, the permission of a person or a person's authorized representative to participate in a research study. Informed consent is achieved when participants [a.k.a., "human subjects"] in a study receive full disclosure of the research plan and its intent, understands all the information that is disclosed to them, voluntarily consents to participate in the study and is competent to do so, and understands that they may withdraw from the study at any time. For this to happen the following strategies will be pursued: • The FoodCLIC participants will be comprehensively briefed to be able to exercise informed consent regarding their participation in different project activities, including their participation in surveys. The purposes of the research, as well the procedures and the handling of participant data, will be explained to those participants in the project offline interventions both verbally and in writing through the project’s information sheet. Especially for the face-to-face interventions (interviews, workshops or events) these explanations are crucial and will be part of the initial briefing of the FoodCLIC participants. For people only interested in taking part in the project online activities, this information will be provided in written form. Participation in the different surveys and data-collection methods implemented within the activities of the FoodCLIC project will be voluntary and data will only be collected with the informed consent of the participants. The process of obtaining informed consent from the participants in the project comprises of the project information sheet (see Annex I) together with a verbal explanation for face-to-face events and, for adult participants, the confirmation of participation in the different activities as well as the authorisation for the use of data collected within these activities by signing both certificates of consent (Annex II and III). The informed consent must clearly state the purposes for which data will be used, including that (if possible, to anonymize) it will be made accessible to third parties for possible re-use, following the EU's open science policy. • For children who will be involved in the FoodCLIC activities, additionally to them and their parents/guardians being provided with the project information sheet (details of their involvement will also be verbally explained during face-to-face activities), the parents/guardians of children under the age of 16 or 18, depending on the regulation in each country2, will be required to confirm their approval for their child to participate in the FoodCLIC activities and to authorise the collection and analysis of their child’s data for the purpose of research within the project, by signing the certificate of consent for parents (Annex III). In addition to the certificate of consent for parents, the children themselves will be required to sign the certificate of assent for children (Annex IV) to confirm that they agree to take part in the FoodCLIC activities. When obtaining informed consent during the face-toface events, a member of staff of the FoodCLIC partner organisation that would have explained the relevant information for consent to the participants will also sign and date the different documents. 2 http://fra.europa.eu/en/publication/2019/child-participation-research 19 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 Table 1 - Overview of the forms/templates to Inform Consent WHO? WHAT? TARGET GROUP TEMPLATE PARTICIPANTS Project information sheet Potential participants and for potential participants under the age of 16, also their parents/guardians Annex I Certificate of consent for participants Participants Annex II Certificate of consent for parents/guardians Parents/legal guardians of underage (16 or 18, depending the country) participants Annex III Certificate of assent for children Underage participants Annex IV RESEARCH PARTNER Confidentiality agreement FoodCLIC project partner involved with participants data Annex V ALL Media waiver Participants of face-toface events Annex VI 4.3 INDIVIDUAL DATA PROTECTION AND PRIVACY Only strictly relevant and necessary data will be collected, stored and analysed. To ensure individual data protection and privacy, data will be stored on a password-protected server of the partner institution that has gathered the data through questionnaires, interviews, workshops or events. Whenever possible, data should be collected already in an anonymized way (i.e., not containing any names, addresses or other information that may lead to the identification of a participant). When not possible (e.g., for longitudinal analysis), after data collection, all personal data (e.g., user data, data 20 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 from questionnaires, interviews, workshops or any other engagement and awareness activities), will be anonymised or pseudo anonymized to ensure that individuals cannot be identified. Data should then be stored so that the identity of respondents is only accessible to the FoodCLIC project partner directly involved in the data collection. Interview and workshop materials, which may reveal the identity of the individual FoodCLIC participants, will not be shared with any third party, including their organisations, schools or institutions. Only anonymized data is deemed adequate for sharing with other FoodCLIC partners (through Sharepoint/MS Teams), and for openly sharing through the Zenodo repository (as foreseen in the Data Management Plan), and such sharing is only possible if consent has been given. The resulting reports and publications will only provide aggregated data and anonymised quotations to ensure that the data cannot be traced back to the individual participants. In addition to the present guidelines, the FoodCLIC’s Data Management Plan (D1.2), and the Grant Agreement, the project partners, including the eight Living Labs, will ensure that the data collection, storage and usage are in line with the EU regulations and national laws on data protection. 21 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 5. COMMUNICATION During the project, the FoodCLIC research partners will communicate to the involved participants the potential risks and benefits of their engagement in FoodCLIC activities. The project information sheet (Annex I) will: • illustrate the purpose and objectives of the project; • descriminate what is expected from the participants throught their involvement in the study (e.g., filling in a questionnaire that takes around 15 minutes) • explain the possibility to refuse, join or withdraw from the activities of the project at any time without giving reason and with no consequences; • communicate the potential benefits and risks of participation; contacts of the involved researchers The informed consent (Annex IIAnnex IV) will: • require explicit confirmation that the participant has read, got answers to any doubts about the study, and comprehended all information laid out in the project information sheet • be signed as an agreement by both the participants and the FoodCLIC researchers; and • be delivered to the participant (a copy) and kept and documented by the responsible researchers. Each participant will be informed of the expectations regarding their participation in the FoodCLIC project activities in advance through the project information sheet (Annex I) and can agree to take part by signing the informed consent form (Annex II – Annex IV), which is written in a suitable language for the specific target groups. In the activities where younger children are involved, suitable ways of communication should be used to ensure they understand what is communicated or asked, or even to evaluate their commitment and how they feel about participating in the project, e.g., using figures. For the face-to-face events the consent forms will also be translated into the national language to ensure comprehension. In case of the participation of children, the responsible FoodCLIC researcher has to obtain the consent of involved children (Annex IV) as well as parental consent (Annex III). With regards to media material produced during events and workshops, the FoodCLIC project team will distribute a media waiver (see Annex VI) to the participants to make sure that they are informed of the plans to produce such material and give them the possibility to agree or disagree with their production and use for the FoodCLIC project’s purposes. As already mentioned above, the signed certificates of consent or assent (see Annex II - Annex IV) will be collected from the participants and stored together with the collected data by the responsible 22 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 FoodCLIC researcher. The participants have the possibility to withdraw their consent, assent and participation at any time of the project without giving reason and with no consequences. The procedure of how these completed templates will be implemented and stored at the FoodCLIC researchers’ organisations will be discussed in the consortium during the regular General Assembly meetings. The templates Annex I - Annex VI will be shared with the project partners on the internal project portal in advance under the following link: http://foodclic.eu. All FoodCLIC project partners have access to these documents in order to make suggestions for adaptation with the goal of ensuring that the information provided can be easily understood by the target groups. These suggestions will result in an adaptation loop of the instruments after which FoodCLIC project partners can translate them into their national languages for their specific FoodCLIC activities and target groups. 23 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 6. RELEVANT REGULATIONS AND SCIENTIFIC STANDARDS The consortium follows the European regulations and scientific standards for the collection and processing of participant data. Some basic regulations and guidelines are listed as follows. The FoodCLIC project will fully respect the citizens’ rights as reported by EGE (European Group on Ethics in Science and New Technologies3) and as proclaimed in the Charter of Fundamental Rights of the European Union (2000/C 364/01), i.e. enhancing and fostering the participation of European citizens in education, regardless of cultural, linguistic or social backgrounds. Regarding the personal data collected during the lifetime of the project for research purposes, the project will make every effort to heed to the rules for the protection of personal data as described in Directive 95/46/EC5 of the European Commission. In addition, the consortium follows the basic European Regulations and Guidelines: ● The Charter of Fundamental Rights of the European Union: https://www.europarl.europa.eu/charter/default_en.htm European Convention on Human Rights: http://www.echr.coe.int/Documents/Convention_ENG.pdf ● Horizon 2020 ethics self-assessment: http://ec.europa.eu/research/participants/portal/doc/call/h2020/h2020-msca-itn2015/1620147-h2020_-_guidance_ethics_self_assess_en.pdf ● EU Code of Ethics: http://www.respectproject.org/ethics/412ethics.pdf ● European Textbook on Ethics in Research: https://ec.europa.eu/research/sciencesociety/document_library/pdf_06/textbook-on-ethics-report_en.pdf ● European data protection legislation: https://gdpr-info.eu/ ● RESPECT Code of Practice for Socio-Economic Research: http://www.respectproject.org/code/respect_code.pdf ● Code of Ethics of the International Sociological Association (ISA): https://www.isasociology.org/en/about-isa/executive-committee/code-of-conduct 24 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 ● A Preliminary Opinion on data protection and scientific research: https://edps.europa.eu/sites/edp/files/publication/20-01-06_opinion_research_en.pdf • Adaptation of the guidance to the Horizon Europe ethics appraisal process and terminology: https://ec.europa.eu/info/funding-tenders/opportunities/docs/20212027/horizon/guidance/roles-and-functions-of-ethics-advisory-ethics-advisory-boardsin-ec-funded-projects_he_en.pdf In addition to the general EU-wide guidelines, the FoodCLIC consortium also has to consider and respect the national regulations and laws as well as the involved research organisations’ own ethical regulations. In regular meetings of the FoodCLIC project’s ethics committee as well as those of the consortium, such issues will be discussed to ensure that the involved parties are not only aware of their responsibilities, but also follow the respective guidelines. 25 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 7. REFERENCES Hilário, A. P., Augusto, F. R. (Eds.) (2020). Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable. Basel: MDPI.Special Issue published online in the open access journal Societies (ISSN 2075-4698) https://repositorio.ul.pt/bitstream/10451/44817/1/Practical_and_Ethical_Dilemmas_in_Researchin g_Sensitive_Topics_with_Populations_Considered_Vulnerable.pdf 32 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 ANNEX IV - CERTIFICATE OF ASSENT FOR CHILDREN The project FoodCLIC is promoting more sustainable, affordable and healthy food for all. • I understand my involvement in the project • I have read the project information (or had the information read to me). I have had my questions answered and know that I can also take questions later if I have them • I agree to take part in the research. Name of the child___________________________________ Signature of the child ________________________________ Date (Day/Month/Year) ______________ • I have currently read out the information sheet to the potential participant and to the best of my ability made sure that the child understands the process she/he will be involved in within the framework of the FoodCLIC project. • I confirm that the child was given an opportunity to ask questions about the project and all the questions asked by her/him were answered correctly and to the best of my ability. I confirm that the child has not been coerced into giving consent and the consent has been given freely and voluntarily. • A copy of the assent form and been provided to the participant and their parents/guardian Name of the project team member/person taking assent ___________________ Signature of the project team member/person taking assent ________________ Date (Day/Month/Year) ______________________________________________ Parents/guardian has/have signed the certificate of consent: Yes or No 33 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 ANNEX V - CONFIDENTIALITY AGREEMENT The user data shared between the researchers in the FoodCLIC project contains personal identifiable information (PII) which is protected by law. To comply with this law, usage and sharing of data is restricted and you must follow the rules of guidelines described in the ethical guidelines defined for FoodCLIC for collecting, processing, sharing and storing of data. In addition to this you are obliged to comply with the following terms: • I will not share the participant data, collected by the project team, I receive with any third parties, or other members of the consortium of the FoodCLIC project without explicit, written consent from the person(s) who provided the data. • Where relevant, I will instruct the people listed below who have access to the data of the relevant ethical protocols and ensure that they follow the guidelines defined for the project • I will delete the data at least _____ months after the project outcomes have been published (recommended time is 3 months) Declaration: I hereby declare my consent with the rules outlined above: Date: _____________________________________________________________________________________________ Name & Organisation: _____________________________________________________________________________ Signature: _________________________________________________________________________________________ 34 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 ANNEX VI – MEDIA WAIVER I hereby grant [name of the organisation] permission to use my image, likeness and sound of my voice as recorded on a photograph, video or other digital media in any and all of its publications, including web-based publications, without payments or other consideration. I understand and agree that all photos will become the property of [name of the organisation] to edit, alter, copy, exhibit, publish or distribute these photos for any lawful purpose. In addition, I waive any right to inspect or approve the finished product wherein my likeness appears. Additionally, I waive any right to royalties or other compensation arising or related to the use of the photo. I hereby hold harmless, release and forever discharge [name of the organisation] from all claims. Demand and causes of action which I, my heirs, representatives, executors, administrators or any other persons acting on my behalf or on behalf of my estate have or may have by reason of this authorization. By signing this form, I acknowledge that I have read and fully understood the above release and agree to be bound thereby. I affirm that I am at least 18 years old, or if I am under 18 years old, I have obtained the required consent of my parents/legal guardians as evidenced by the signature below. Name ______________________________________________________________ Signature ___________________________________________________________ Date ________________________________________________________________ If I am under 18 years old, a parent/legal guardian must sign: Parent/legal guardian signature____________________________________ Date: ___________________________________________________________ ANNEX VII – SURVEY 35 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 Survey to LL teams (coordinators and researchers) Objective of the survey To identify ethical dilemmas that each LL may foresee when dealing with vulnerable groups. The results are meant to be considered in the Ethical Handbook and the definition of the Informed Consent Forms. What is an ethical dilemma? An ethical dilemma (ethical paradox or moral dilemma) is a problem in the decision-making process between two possible options, neither of which is absolutely acceptable from an ethical perspective. Generally speaking, a dilemma may be seen as a conflict that need to find a balance between different alternatives. It is not a problem, not even a difficult one, to solve. A problem has a solution, while a dilemma is about finding a balance between different alternatives. However, it should be pointed out that a dilemma can be problematic in the sense that it can be difficult to find the right balance. A dilemma is thus a goal conflict where it is a matter of finding a balance between goals that are each desirable but where they are in opposition to each other. What is a vulnerable group and the inherent sensitiveness? Within the field of social sciences, the concept of vulnerability has been used to define people who lack the capacity to make decisions, due to physiological/psychological factors or status inequalities, and/or who experience impairing conditions that might constrain or diminish their physical and cognitive autonomy. In this category, it is possible to include groups that are traditionally marginalized, institutionalized groups, groups without the mental capacity to consent, groups that engage in risky behavior or have contact with/live in environments considered dangerous or impoverished. On the other hand, the concept of sensitive topics has been used to describe themes that might be considered intrusive and/or harmful for research subjects and/or for the researcher. Although sensitivity is relational—i.e., is negotiated and shared in the relationship with others —it is possible to foresee sensitivity in certain topics, based on past experiences, and on a kind of established and shared knowledge around certain themes and subjects that might lead to negative emotions. Generally, these topics concern issues that are considered taboo or stigmatizing, issues related to illegal or criminal practices and personal issues that can cause discomfort. There is a very close relationship between the concept of vulnerability and sensitivity, since the research on groups considered vulnerable can lead to addressing topics considered sensitive, and vice versa.3 Where to find the survey? DMP Survey Ethics questions.docx Deadline to respond to the survey: by the end of the 20th of March. 3 Hilário, A. P., Augusto, F. R. (Eds.) (2020). Practical and Ethical Dilemmas in Researching Sensitive Topics with Populations Considered Vulnerable. Basel: MDPI. [This is a reprint of articles from the Special Issue published online in the open access journal Societies (ISSN 20754698) https://repositorio.ul.pt/bitstream/10451/44817/1/Practical_and_Ethical_Dilemmas_in_Researching_Sensitive_Topics_with_Population s_Considered_Vulnerable.pdf 36 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 Living Lab: _________________________________________________ Respondent: LL coordination ____________________________________________ LL Researcher _____________________________________________ QUESTIONS 1. Which groups are you planning to work with? G1. Adults G2. Youth G3. Children G4. Elderly G5. Less favored (Poverty/Low income) G6. Less educated G7. Food deprived G8. Health / Malnutrition G9. Intercultural groups G10. Legal migrants G11. Undocumented aliens G12 Other(s) ______________________ 2. Which of those groups are considered vulnerable and in which sense? Please identify the group(s) and the respective vulnerability (social, economic, health, cultural…) 3. Which kind of problems/conflicts do you expect to face when approaching those vulnerable groups? Please list the groups in question 1 (number) and relate with the expected problems below (letter) (e.g G3 b. – Less educated group with Lack of Confidence) a. Availability of time b. Lack of confidence c. Lack of interest/motivation d. Communication barriers f. Political issues g. Cultural/Ethnical issues (e.g. Muslim women) h. Violence 37 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 i. Trans identity j. Suffering l. Physical barriers m. Stigmatization n. Recordings and pictures o. Other(s) ________________________ 4. Considering the problems you have identified, which type of ethical dilemma do you foresee when approaching the vulnerable groups? 4.1 Which kind of ethical dilemmas do you foresee when involving actors from the quadruple-helix groups? (Government and public sector, Research and education, Civil society, Business and industry) (See Figure 2 of the D1.1) 4.2 Which kind of ethical dilemmas do you foresee when involving particularly actors from the quintuple-helix groups? (Natural environment) (See Figure 2 of the D1.1) 4.2 Which of ethical dilemmas would require an Informed Consent Form? 5. How do you expect the vulnerabilities previously identified would influence the implementation of the real-life interventions in terms of Ethics? 6. Which topics of the research do you expect to be (potentially) dealing with ethical dilemmas? (to be reponded by LL researcher) 7. To what extent will the topics in the research be (potentially) sensitive? (to be responded by LL researcher) Final note: The EAC would like to communicate an intention to provide tailor-made support along the project, e.g. during the LL support meetings, in case any ethical dilemmas arise that partners do not immediately know how to handle after having consulted the guidance we are preparing. 38 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 PARTNERS 39 Foodclic / DELIVERABLE 1.3 ETHICS HANDBOOK /17/06/24 CONTACT US: www.foodclic.eu #foodclic