netWorked Youth Research for Empowerment in the Digital society Participant Protection Policy Year 3 update WP1_D1.7 Copyright This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 727066 Unless officially marked PUBLIC, this document and its contents remain the property of the beneficiaries of the WYRED Consortium and may not be distributed or reproduced without the express approval of the Project Coordinator. 2 H2020-SC6-REV-INEQUAL-2016 Grant Agreement number: 727066 1st November 2016 – 31st October 2019 * cfr. GA – Annex I Part A – 1.3.2 WT2 – list of deliverables Deliverable description Filename WYRED_WP1_D1.7.PDF Type R Dissemination level PU DOI 10.5281/zenodo.3571950 Due Date (in months) M36 Deliverable contributors Version No. Name, Institution Role Last update 1 BOUNDARIES Nick Kearney 28/12/2016 2 BOUNDARIES Nick Kearney, Sabine Zauchner- Studnicka, Mary O’Reilly, Anna Renau, Zuhal Yilmaz 20/01/2017 3 BOUNDARIES Mary O’Reilly, Nick Kearney 21/02/2017 4 becomes D1.5 BOUNDARIES Nick Kearney 29/10/2017 5 becomes 1.6 BOUNDARIES Nick Kearney 27/10/2018 6 becomes 1.7 BOUNDARIES Nick Kearney 31/10/2019 3 Contents 1 Introduction _____________________________________________________________ 5 2 The ethics issues raised by the WYRED project __________________________ 5 3 Engagement and Informed Consent ____________________________________ 8 Identification and recruitment of research participants. _______________________________________ 8 Informed consent procedures _________________________________________________________________ 9 Cases where informed consent is not possible _______________________________________________ 10 4 Data Protection ________________________________________________________ 12 Overview ______________________________________________________________________________________ 12 Anonymisation of data ________________________________________________________________________ 12 Off-line participant database _________________________________________________________________ 14 Data profiling _________________________________________________________________________________ 15 Third party access _____________________________________________________________________________ 15 Social media and the wider Internet __________________________________________________________ 15 Videos and images ____________________________________________________________________________ 16 Data and third countries ______________________________________________________________________ 17 GDPR __________________________________________________________________________________________ 17 WYRED Open Data Policy _____________________________________________________________________ 18 5 Safeguarding __________________________________________________________ 18 Vulnerable individuals/groups ________________________________________________________________ 19 Measures taken to prevent the risk of enhancing vulnerability/stigmatisation _______________ 19 6 Diversity and pedagogical aspects. ____________________________________ 21 7 Approval and compliance _____________________________________________ 22 Internal approval _____________________________________________________________________________ 22 External Independent Ethics Advisor _________________________________________________________ 22 4 Ethical approvals ______________________________________________________________________________ 22 8 Yearly updates _________________________________________________________ 22 9 Annexes – informed consent forms ___________________________________ 23 Informed consent form (participant 18 or over) ______________________________________________ 24 Informed consent (parent/guardian) _________________________________________________________ 25 Informed consent (young people 14-17) ______________________________________________________ 27 Informed consent (child under 14) ____________________________________________________________ 28 10 References ____________________________________________________________ 29 5 1 Introduction This document outlines the WYRED project (García-Peñalvo, 2016b, 2017, 2018; García-Peñalvo & García-Holgado, 2019; García-Peñalvo & Kearney, 2016; Griffiths et al., 2017) Participant Protection Policy. Its focus is ethical, the aim being to ensure that all participants in the project activity are appropriately protected. This refers to issues such as informed consent, data protection, safeguarding, and diversity among others. After outlining and briefly discussing the key issues the document sets out the WYRED policy with regard to each. This policy informs all the activity involved in the WYRED approach and serves as one of the key reference points for the ethical review of the project. As it has not required substantial alteration during the project, and the Independent Ethical Review has produced a positive evaluation of it, the aim is to continue to use it in the ongoing work of the WYRED Association. 2 The ethics issues raised by the WYRED project The WYRED Association (which takes over the work carried out during the funding period by the WYRED consortium) recognizes that people have rights with regards to the information related to them and that we have a responsibility to uphold those rights. The rights that form the backbone of our approach are: • The right to be heard. • The right to dignity and respect. • The right to make an informed decision. • The right to privacy. • The right to not be put at risk. The focus of the WYRED approach is research involving human participants, many of whom are schoolchildren and young people. Furthermore, due to the innovative nature of this project which aims to empower young people, the participants, rather than being passive objects of the research actually carry out the research activities. In this sense, they carry out activities usually implemented by adults. As minors, some are unable to provide informed consent and due to the focus on diversity in the project some of them are members of vulnerable groups. This raises a series of ethical issues (duly flagged in the proposal checklist) that reflect the rights mentioned above. Principal among these are the following: 6 • Engagement and Informed Consent. Engaging the participation of children and young people in an innovative research project such as this requires careful attention to the ways in which recruitment is managed. In particular, the process of informed consent needs special consideration, since an important number of participants, as minors, are unable to give informed consent. The procedures involved are described later in this document. • Data Protection. The work involved in the approach involves the collection of personal data, and at times this is sensitive personal data, such as data that can reveal political opinions or religious or other beliefs, as well as data relating to health, sexual orientation, or other aspects as well as other data defined as sensitive by domestic law. This data and the participants are subject to tracking and observation, and further processing of the data takes place, both by the participants themselves and sometimes third parties. Our strategy for data protection and management is described later in this document. • Safeguarding. The participants in the research activities in the WYRED approach are involved in a range of interactions, both online and off-line, with other young people and children, and with adults. This naturally introduces elements of risk and it is necessary to ensure that they are suitably protected and safeguarded throughout the process. A range of vulnerable groups of different kinds are involved and it is especially important to avoid the risk of increasing their vulnerability. Our approach to this is described later in the relevant section of this document. • Diversity and pedagogical aspects. A central objective of the project is to ensure that a wide range of voices is heard through the WYRED process. Diversity and heterogeneity form part of the design, and this raises issues since the different stages and rates of development of different participants from different cultures and contexts require different treatment. The design of the approach aims to accommodate, and indeed celebrate this diversity. However, it is necessary to ensure that adverse effects are not generated. Our strategy in regard to this aspect is covered later in this document and in more detail in WYRED Project deliverable D2.1 which focuses especially on this issue. • Approval and compliance. In addition to the ethical issues described above, it was necessary also to ensure due compliance with the ethical standards of H2020, and that ethical approval is obtained from the relevant authorities. In addition to this it was important to have an independent view of these considerations in the project and the degree to which they were taken into account, in order to complement the work carried 7 out in relation to ethics by the consortium. This was done, and the insights will be borne in mind in the future work of the WYRED Association. As mentioned, the WYRED approach to each of these ethical issues is described in detail below. However, before describing each of these aspects it is necessary to comment on some overarching aspects of the approach that show how due attention to ethical considerations was baked into the design of the project. The first of these relates to the consortium. The project partners are experienced in research of this kind and habitually implement ethical review and informed consent processes for all research participants. These comply with internal requirements in their institutions and with legal requirements in their respective countries. Similarly, all the partners observe responsible data handling procedures and in general implement appropriate ethical treatment in all the work they do. They brought all this practice to bear in the project. Secondly, ethics was an integral part of the work plan. Five of the 10 work packages explicitly provided for ethics-related work. In WP1 in the Definition of Processes, procedures such as the recruitment and informed consent of participants were addressed, as well as safeguarding procedures, and this Participant Protection policy document. WP2 focused on inclusion and especially addressed issues relating to the ethics around diversity. In WP3 where the platform (García-Holgado & García-Peñalvo, 2018; García-Peñalvo, 2016a; García-Peñalvo & Durán- Escudero, 2017; García-Peñalvo, García-Holgado, Vázquez-Ingelmo, & Seoane-Pardo, 2018; García-Peñalvo, Vázquez-Ingelmo, & García-Holgado, 2019; García-Peñalvo, Vázquez-Ingelmo, García-Holgado, & Seoane-Pardo, 2019; WYRED Consortium, 2017, 2018) was built, close attention was paid to data related issues and procedures such as anonymization. In WP9, the creation of the project management guidelines in WP9 Task 9.1 specifically defined RRI guidelines, which foregrounded ethical issues. Lastly in WP 10, the evaluation of the quality of the project included a focus on the ethical dimensions of the project and an external ethics expert was responsible for evaluating this aspect, and also ensuring that the work complied with H2020 ethical standards. The final Independent Ethical Review report, D10.12, covers this. These five work packages constituted the infrastructure of the WYRED project and as can be seen, in each of them ethical considerations were taken into account and formed an integral part of the work furthermore covering all of the ethical issues that the approach raises, as set out above. Lastly, it is important to take into account that WYRED is itself an ethical approach, since its central aim is to ensure that the young can exercise their right to be heard. Its focus is to take a very 8 large and heterogeneous social group that is to a great extent disempowered and unheard and give it the tools and the wherewithal to participate in society. It is important to note that this participation was a fundamental objective of the project and will continue to be the driver of the WYRED Association. Some approaches to ethics in relation to working with young people focus on protection of the young within a safe space, where all exposure to external factors is controlled. As will be seen in the detailed descriptions later in this document, we created this safe space, in which diversity is celebrated, in order to give due attention to the ethical issues the project raises. However, we have always believed that protection is insufficient, the young cannot remain indefinitely within our spaces and will have to move out into the wider world and engage with third-party spaces and stakeholders. Given this it would be unethical not to prepare them, and for this reason, the project also created introductory training actions for the participants in the project around the ethical issues that the work raises, such as personal data, safeguarding, political issues diversity and gender among others. In this way we complemented the ethics of protection with an ethics of empowerment. In the following sections, we outline the detailed procedures relating to each of the ethical issues raised above. 3 Engagement and Informed Consent Identification and recruitment of research participants. Participants were identified and researched through the networks of the partners through direct contact and invitations to participate sent to stakeholders (school principals, rectors, directors of youth organisations, ministries etc.) to achieve their participation and high-level support to reach children and young people. The project was also presented directly to school children, youth groups, and students. The organisations contacted were asked to select their participants for the activities in such a way as to develop a sense of ownership towards the project, ensuring that the right individuals were selected, and thus also to ensure the impact on the organization and local young people later on. Criteria for selection include the following: • The profile of the participants. • Active involvement in partner organizations. • Their degree of motivation to take part in the project. 9 Moreover, gender balance was a focus and the participation of young people with fewer opportunities was encouraged. Since the process of incorporation of participants was and will continue to be cyclical, it is possible to adjust the recruitment focus and criteria to achieve a balance of different groups. To ensure appropriate diversity, a set of criteria was defined in WP2. The following list comprises these criteria: • Gender: equal share of male and female. WYRED is open to diversity in also considering possible further gender-categories in some participating countries. • Age: equal share of ages <10; 10-14; 15-18; 19-24; 25-30. • Education respectively work situation: a balanced distribution of educational levels (ISCED) and of youth in the workforce. • Socio-economic status: a share of high (25%), middle (50%) and low (25%) SES per county was envisaged. • Geographic location: Representation according to the national population in the four categories (village, small, medium and big town) was aimed at. • Cultural background/migration: Individual measure of the share of migrants in the partner countries, specific cultural groups as far as given in the partner countries. • Individuals with disabilities: A share of 15% of participants was aimed at. • Religion: as related to the share in the partner countries. • Sexual orientation: implemented only for participants being full age and in some partner countries; the benchmarks for homosexuality may be within a range of 1 to 10 %. Informed consent procedures Each of the organisations participating in the consortium had an informed consent procedure in place at the start. These varied in their complexity but were all informed by a set of basic principles, these were: • The provision of appropriate and accessible information. • Promoting voluntary involvement. • Recognising the competence to make an informed decision. The procedures also contained a range of common elements such as: • Introduction to the work to be done and the organisation. • Descriptions of the data to be collected. • Provisions relating to data protection and retention. 10 • Statement regarding video/photos. • The nature of the participation in the project. • Information about the risks and benefits of this participation. • A commitment to confidentiality. • They have the right to withdraw from the research. • They have the right to consultation of the data held. • Notes on the legal framework that governs this consent procedure. • A questionnaire checking understanding. • A signed declaration. In WP1, in the definition of processes, the consortium developed informed consent procedures based on the existing procedures the partners used and the forms used are included as Annexes to this document. The focus was on maximum transparency to ensure that consent was fully informed. Four versions of the informed consent procedure were produced, relating to the age of the individual and the right to sign the document. These included a version for those with the right to sign, a version for parents and carers, and simpler versions for young people, and for children, who although they may not have the right to sign, have the right to understand the process and the reasons why the parent or carer is signing. This is further described in the next section. Cases where informed consent is not possible Though in several of the partner countries there is no clear regulation with regard to parental consent and age groups, in order to have a common approach we obtained parental consent in all countries for participants under 18 which can be seen as a common denominator for the countries that do have regulations in place. In cases where informed consent is not possible the consent form, in addition to the considerations mentioned above, also tends to contain: • A description of the relationship of the legal representative with the participant. • The reason for this representation. • The age of the minor. • Other considerations that may make the informed consent of the individual impossible. As mentioned above, though informed consent is not always possible, the right to information should be respected and for this reason we provided this information even in cases where the individual cannot sign for themselves, with a focus on assent. 11 In the WYRED approach the aim is to engage with children and young people as active participants in research rather than carrying out research on young children. This approach recognises their agency as well as their rights to have a say in matters that affect them. Research that reflects a participatory rights perspective and respects agency is based on children and young people making informed decisions about their participation. While recognising the importance of informed consent from parents and guardians, we equally emphasise the importance of assent as a means of recognising the wishes of children and young people in relation to research participation. In this context, assent is defined as a relational process whereby children’s actions and adult responses taken together reflect children’s participation decisions. The concept of assent, agreement obtained from those who are not able to enter into a legal contract involves more than passive acceptance or non-refusal. Assent as an ongoing process, which should be clearly outlined, requiring the researcher to be vigilant to the responses of the child as an explicit, affirmative agreement to participate, not merely the absence of objection. In adopting this approach with young children especially, we acknowledged the importance of non- verbal, as well as verbal actions as children use a range of means to signal the choices they wish to make. Recognising children’s ability to provide assent also requires acknowledging their right to dissent and to opt out of the research. The same basic principles underpinning informed consent for adults mentioned above are applicable in contexts where children are asked to make decisions about assent. Furthermore, we see the roles of adults in creating enabling environments and interactions and in recognising and responding to children’s actions are critical. The process involving children and young people’s informed assent to participation was facilitated and it was revisited and checked throughout the process as their understanding of what is entailed develops over time. For younger children or children and young people with learning disabilities, written consent forms are not appropriate, and age appropriate alternative means of gaining informed consent were employed. This involved producing accessible information that is appropriate to the specificities of each individual and needs to be discussed with support from a parent or practitioner. This is also accompanied by a consent form for parents which clearly explains the purpose of the project or research and gives options for consent for all elements of the approach. Where there were specific activities which may be more sensitive, such as video or photographs, we included 12 specific consent for these elements which were clearly outlined. The processes for the storage/destruction of these in relation to data protection are outlined below and were also defined in WP1 along with the procedures and legal requirements in relation to child protection, in the Participant Protection deliverable. In the WYRED approach we only proceed with activity having gained assent from the young participant and informed consent from his/ her parent or carer. Even a very young child can give assent e.g. indicating a picture of a smiley/sad face thumbs up/down and we encourage this. However, this type of assent is not in itself enough without the context being explained to young children. The project is explained to young children by practitioners who are familiar with their ways of communicating and in ways that they understand. 4 Data Protection Overview The WYRED process involves collection and analysis of sensitive personal data and opinions. The consortium considered that responsible handling of the collected data, and appropriate ethical treatment of the study participants themselves, their identities, gender, etc. as well as being necessary in themselves in any research process, were important to ensure the relevance and validity of the project outcomes. The activities complied with Data Protection regulations in the countries where the activities are taking place and EU regulations and directives / the highest ethical standards. Personal data was not made public or given to a third party. The principle of confidentiality was observed at all times, since this is a key element of the right to privacy. However, two exceptions apply where there is a legal and ethical responsibility to report to social services. These are when a child or young person is at risk or harm to themselves or others and in cases of abuse, neglect, or exploitation. Fortunately, these eventualities did not occur during the project. Anonymisation of data In order to put these principles into practice, we implemented the WYRED platform as follows. It is a safe space in which all participants have an anonymous identity which they choose when they enter the project. This is linked to their personal data in a confidential off-line database which is only accessible to a very limited number of WYRED staff. This linkage is for the purpose of identification in cases of abusive or otherwise unacceptable behaviour by participants, and on 13 leaving the project the personal data is destroyed. The participants are able to express their opinions and reflections on the different activities and subjects that the project covers, describe and participate in their research activities, and interact respectfully with others. Our perspective was that although certain elements may be lost due to the interaction through an avatar, the value of the protection that this anonymity provides is of greater importance. Furthermore, the linkage to the off-line database helped the project to avoid incidences of abusive behaviour that can occur as a result of anonymity in online spaces. Though the registration protocol that is used for the online platform is defined in detail in WP3, the following data protection criteria were implemented. • Access to registration is by invitation. It is linked to our informed consent procedures. • In cases where the participant is under 18, the invitation is supported by an adult with a family or educational link with the participant and the appropriate informed consent procedures. • All participants fill out a registration form in which data is separated into three parts: o Information that is used to create a digital identity, or avatar, for participation in the platform which is totally independent of the real identity of the participant, in such a way that all the interactions in the platform are anonymous, thus guaranteeing the freedom of expression necessary for full participation in the project activities. o Demographic and personal data. These are stored in an off-line database to which only the coordinating partner has access, for the purposes of providing anonymous data regarding the demographics of participation that can be used for example by the Inclusion WP. o A link between the avatar on the platform and the real identity of the person which is stored in encrypted form, off-line, and which is only to be used in cases where abusive or unacceptable behaviour in the platform (for example racist, sexist or discriminatory content) requires a response. Only the Ethics Advisory Board has access to this information. Participants were made aware of the existence of this link. No use was made of this during the funded period of the WYRED project. • This decoupling of personal data from the project activity ensured that no data revealing the ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, health or sexual orientation of individuals was processed, in accordance 14 with Directive 95/46/EC of the EU Parliament and of the Council of 24 October 1995, Article 8. Off-line participant database The participant database, which contains the demographic and personal data of the users is regulated by the Spanish Personal Data Protection Law 15/1999 since this database is stored in Spain under the control of the coordinating partner, the University of Salamanca. The provisions of this law indicate that the users whose personal data are requested should be previously, and clearly informed: • That their personal data is to be stored in a database. • The reason for the data being collected. • Who has access to this data. • That they have the opportunity to exercise their rights to access, rectify cancel and contest the data. • Of the identity and address of those responsible for the data storage and processing. Those responsible for the database and those involved in any part of the processing of personal data are obliged to maintain confidentiality with respect to the data, during and after the end of their work relating to the database. Access to this data may not be given to 3rd parties and those responsible for the database are obliged to implement any request for rectification or cancellation by the interested party in a period of 10 days. The procedures involved are made clear to all interested parties and established as a regulation. In addition to these considerations derived from the Spanish law, the following also apply: • The data collected is accurate and up to date and only adequate, relevant and not excessive amounts of data will ever be collected in addition to these considerations derived. • The data is only used for the purposes for which parental or self-consent was given and then destroyed along with the link to the avatar. No one will be able to retain or use this information to contact the child or young person or the family for any other reasons. • Personal information on children and young people is never be used in ways which allow the individual to be identified (e.g. publicity material must not give a full name and address). 15 Data profiling With regard to data profiling, our activity was guided by CoE Recommendation CM/Rec(2010)13 and the accompanying explanatory memorandum entitled "The protection of individuals with regard to automatic processing of personal data in the context of profiling". As explained above, in the WYRED system, respect for privacy and the principle of non-discrimination has always been paramount - all data is always anonymised and the database linking profiles to real data is offline, and connections would only be made between anonymous profiles (avatars) and real personal data in cases where it is absolutely necessary due to potential harm to others (bullying etc). The personal data is saved as long as a participant is actively participating in WYRED in conformance with provisions of the forthcoming General Data Protection Regulation. In this way, all profiling that takes place in the WYRED project is anonymous. Third party access Third party access, for example by researchers to the data generated in the project, is subject to an approval process, within the context of a policy of open data. Written applications for approval need to be processed by the Ethics Advisory Board, which will provide it to researchers that can accredit their affiliation to a professional organisation. The data accessible is always the anonymised data, never the personal data. Social media and the wider Internet Though the WYRED platform is designed as a safe space, the participants in the activities may use social media accounts that they already have to communicate, and to carry out some of their research through online apps and spaces (e.g. Facebook, Instagram, Snapchat) or other online communication tools (e.g. Skype, Whatsapp). Though it is not possible (or ethical) to control all their activity, our aim is to ensure that in activity related to WYRED, appropriate safeguards are in place to protect the children and young people engaging with the project through this medium. Reference has been made to guidelines published by INSAFE (betterinternetforkids.eu) and the UK Council for Child Internet Safety (ukccis.org) as benchmarks in this area. Anyone working in or with the WYRED approach should adhere to the following: • Work done in relation to WYRED through public social media will be subject to prior approval by the internal Ethics Advisory Board. 16 • If a profile or group is set up directly related to WYRED activities it is essential that a member of the Association (moderator) joins and oversees the content and activity. • The role of the moderator should be to monitor conversations, images and other activity of group members and challenge, educate or intervene as necessary. • At the start of their participation in WYRED activity, participants are educated about online safety and ethics issues. Moderators should take responsibility for further educating members of the group about online safety, including how to customize privacy settings. • Sufficient moderation should be in place to inhibit anyone working for or on behalf of WYRED from having a private conversation with a child, this includes with the moderator. • This extends to email correspondence, a group inbox is used, and text messages, which may require the use of a staff account that multiple staff have access too. • Personnel working on the project should not make use of their personal social media accounts for WYRED activity. In such cases a new account should be opened that enables the staff member to maintain boundaries between their personal and professional lives. This is however not an exhaustive list. As social media rapidly evolves, the Association will continue to revise and adapt the guidelines and take responsibility for considering the full range of risks and safeguards required to protect children. The key questions that will guide our thinking are: • Could any personnel or other participant use this social medium to develop a private relationship with a child, thereby exposing the child to the risk of abuse? • Could use of this social medium in WYRED facilitate any other form of harm to a child? (e.g. could it bring children into contact with a third party who poses a risk of harm). Videos and images Given the importance of video and images in the digital lives of children and young people some of their research activities involve the creation of images and videos, and these sometimes include themselves. The initial training addresses these issues and the implications of this. There are two main levels of privacy. The first refers to videos created for and within the platform. In these cases, as with all communication, there is no linkage to real personal data. In other words, images and recordings of children under the age of 18 are accompanied by identifying information (e.g. the child’s real name). In addition to this WYRED has a duty of care to protect children even if they are willing to participate and voice their concerns. Any image or recorded case history of a child must not place them at risk or render them vulnerable to any form of 17 abuse/exploitation. In most cases, the story of a child can be told through application of our guidelines, however there are some key areas where we are extremely alert and sensitive to child protection issues, which include: • Emergency situations - vulnerable, traumatised or orphaned. • Conflict situations - as above and combatants. • Abuse - survivor of any form of child abuse. • Crime- perpetrated or survived a crime. Participants are encouraged to exercise judgement and creative skills to tell a powerful story in a way that doesn’t reveal a child or young person’s identity. The WYRED Association provides support in this for all videos and images, but with especial attention to the second type of images and videos which are those that are designed for interpretation and valorisation purposes which are usually publicly available. In all cases during the funding period, these have been created in such a way as to avoid revealing the identities of the participants. Data and third countries With regard to Israel and Turkey we took into account the current GDPR (General Data Protection) provisions, though our stance on anonymization, as can be seen above, goes beyond that legislation. The procedures we used applied to all partners, including the Israeli and Turkish partners and in this way the whole project consortium was committed to the highest ethical standards. The data circulating within the project was already anonymised as all participants have an avatar within the system. In this way, it was not possible for personal data or sensitive information to be accessed by these third countries. As is the case for other third parties external to the project, the access from third countries is governed by an approval process. GDPR Provision was made for this legislation coming into effect in 2018 by implementing measures beyond its requirements from the start of the project. The training provided to participants also made reference to this regulation as a benchmark for privacy and data protection in Europe. In particular, as mentioned above the “right to erasure” provision was fully satisfied, and personal data is destroyed at the end of each individual’s involvement with the project. 18 WYRED Open Data Policy It is a WYRED commitment that all WYRED resources, after the implementation of anonymisation processes, is publicly available through open access policies, including the datasets and data results. All published data belonging to the consortium are made available under Creative Commons licences which are Attribution-NoDerivs CC BY-ND, or less restrictive, and participants are encouraged to use these as well. Open standards for data and documents are used in all publications. Responsible Research and Innovation (RRI) guidelines designed in WP7 included specific information on how to handle all data that is used for external facing activities outside the platform sensitively with respect for the individuals participating in the project. The core values that form the basis of the guidelines were also defined and agreed in a consortium agreement contained within the project handbook defined in WP9). This set out the conditions which determine public facing project activities, IPR, publishing policy, and data management, to ensure that this was oriented towards the support of the WYRED platform. It was established in M1 in a process led by the coordinating partner, with all partners committing to the final document working in parallel with the definition of processes in WP1. 5 Safeguarding The consortium partners have experience in working with children and young people and have their own policies for the protection and safeguarding of children and young people. These policies include, among other considerations, procedures to ensure safety, recognition of abuse or neglect, action in relation to abuse or neglect including communication (or not) with parents/carers and consultation and referral procedures in addition to clauses related to confidentiality. Part of the work in WP1 was to define a safeguarding protection policy for children and young people for the WYRED project, which brought together the different policies of the different partners, focusing particularly on those policies that afford most protection. This included a code of conduct for staff working with children and young people in the project, particularly in relation to appropriate boundaries. The key principles that underlie the safeguarding and protection policy in the WYRED approach are as follows: • The welfare of a child or young person will always be paramount. 19 • The welfare of families will be promoted. • The rights, wishes and feelings of children, young people and their families will be respected and listened to. • Those people in positions of responsibility within the organisations in the consortium will work in accordance with the interests of children and young people and follow the policy outlined by the consortium. • Those people in positions of responsibility within the organisation will ensure that the same opportunities are available to everyone and that all differences between individuals will be treated with respect. Vulnerable individuals/groups The project aimed to attract participants from a wide range of different social groups. Children and young people of themselves already constitute a vulnerable group, but within this the participation of other vulnerable and marginalized populations, such as disabled young people, was also sought. To ensure heterogeneity in the project and give these groups the opportunity to be heard, it was important that they were adequately represented. We therefore made every effort to ensure that vulnerable groups were fully represented in the project, and that the resulting datasets could be disaggregated by gender and other relevant categories, and we made all reasonable efforts to ensure the inclusion of participants from marginalized populations. This was a key part of the work in WP2, which focused on inclusion and we took particular care to use strategies that minimized or mitigated the impact of barriers to the participation of women, in order to ensure that their voices were heard and their opinions/experiences were accurately and fully represented. Special attention was paid to taking women’s particular needs into consideration during the entire project lifecycle. Measures taken to prevent the risk of enhancing vulnerability/stigmatisation As stated above, the WYRED project focused on working to ensure the involvement of young people with fewer opportunities and coming from vulnerable groups and backgrounds. As we have indicated, we foster and promote their participation in the project by providing a safe and comfortable environment for them to participate and to freely express their opinions, beliefs, cultures, identities, and the WYRED Association will continue to do this. The WYRED partners have experience in working with heterogeneous groups and contexts, and as we have mentioned the project had a special focus on inclusion through WP2. In particular this focused on the fact that 20 along the gender and diversity criteria there exists a multitude of stereotypes which have the potential for exclusion from the digital future (e.g. girls are not gamers, technology is an issue for boys, foreigners are less educated, migration background is negative, they are too young to know, etc.) and the discussions and reflections on these issues in WP2 focussed on prevention of the risk of enhancing vulnerability. Part of the definition of processes in WP1 further defined inclusive and non-stigmatizing measures to ensure the full involvement and participation of vulnerable individuals and groups within the whole process. The main considerations were as follows. All WYRED activities, during and after the funding period, are under-pinned by the basic ethical principle of “Do No Harm”. By this we mean we will not intentionally or otherwise cause harm through the implementation of the WYRED research activities. However, we recognise there is always a possibility of inflicting unintended harm, particularly in relation to vulnerable populations such as children. For this reason, we have minimum standards in place intended to minimise this risk: • At least one adult involved with all activities has clearly defined responsibilities for Child Protection. • This Participant Protection Policy is available to all personnel working on WYRED activities, including the participants themselves. • As mentioned previously, children and young people are introduced to the policy during the informed consent/assent process and the initial training process. • Care will be taken that no material covered or discussed during research would harm, or adversely affect a participant. Topics, which may be scary, cause upset, relate to politically sensitive areas or risk causing tension between the respondent and their parent/guardian must be handled very carefully in order to avoid such a reaction. • Additional care will be taken so that any data collected, and analysis produced, does not cause any harm or adversely affect any of the respondents. • Activities will not be done which involve children or young people giving personal information about others. • Children and young people must be reminded of their right to withhold information for any particular questions. • Child friendly complaint mechanisms are in place and widely publicised. 21 • A risk assessment was conducted as part of the project management processes in WP9 considering all aspects that may directly or indirectly harm children or young people and how these risks can be mitigated. • The design of the platform took into account usability and accessibility issues for all the groups involved, and these participated in testing. • Direct feedback from participants was sought throughout the design process. Ultimate responsibility for ensuring these standards were applied in practice lay with the project coordinator. However, it is important to stress that child safeguarding is a shared responsibility. All staff and partners working with children take personal responsibility for upholding these minimum standards, and the WYRED Association will continue to work to ensure this. 6 Diversity and pedagogical aspects. WYRED (during and after the funding period) focuses on giving a wide range of different young people a voice. The group of participants is therefore be naturally heterogeneous, with different capacities for self-expression and participation that vary with age, linguistic skills, and cultural and social context. From an ethical perspective it is necessary to ensure that all participants treat each other with full respect and tolerance at all times. For this reason, at the start of their participation they are asked to agree to a set of community guidelines. These were drawn up as part of the Training actions developed in WP4 with the support of the Inclusion team, and include statements relating to • Awareness that communication within the WYRED platform is monitored. • Commitment not to share any material which is illegal, inappropriate or may cause distress to others. • Commitment not to behave in ways that may cause distress or harm to others. • Commitment to report any illegal or inappropriate or harmful material or comments. • Commitment not to post any images or photos without permission, or otherwise infringe copyright. • Commitment not to share personal information or any personal information of others. • Commitment not to use the WYRED space for commercial or marketing purposes. • Awareness that non-compliance may lead to removal. 22 As in the case of informed consent, different wording was developed for different age groups. At the start of their participation, they are asked to comment on these guidelines, and to suggest changes, in order to promote a sense of ownership of the rules. 7 Approval and compliance Internal approval An Ethics Advisory Board (EB) was established in WP10 and this ensured the alignment of tasks and activities within the ethical requirements and procedures established in WP1. The EAB was made up of a representative of each partner. The Ethical Board was available to be consulted during the project whenever potential ethical issues arose. This did not take place during the funding period. Partners also had to seek permission from the EAB before conducting any new activities that emerge during the project that are of an ethically sensitive nature, but this did not prove to be necessary during the funding period. The EAB will continue to exist in the WYRED Association and is currently made up of members of the Board, there are plans to extend this and create a Youth EAB. External Independent Ethics Advisor An external and independent ethics advisor was appointed to oversee the ethical concerns involved in this research. A report was produced in spring 2018 and submitted to the EC with the financial reports and another has been produced at the end of the project. This work was assigned to WP10 and a subcontracting budget was assigned to WP10 for this purpose. Ethical approvals Copies of ethical approvals for the collection of personal data by the competent University Data Protection Officer and the National Data Protection authority were submitted to the European Commission by the coordinator. 8 Yearly updates In October 2017 the document was reviewed, and no changes were seen as necessary. Continuous revision took place throughout Years 2 and 3 and no substantial changes were made. Revision will continue after the funding period on a yearly basis, under the aegis of the WYRED Association. 23 9 Annexes – informed consent forms The consent forms attached are models, that each partner translated and localised to ensure full comprehension by the participants. The models provided were originally considered provisional, but it has not proved necessary to make alterations to them during the funding period. 24 Informed consent form (participant 18 or over) Title of the study: WYRED Information about the study: Short description of WYRED and invitation to participate. Phrasing adjusted to the target group. (about 150 words) Voluntary agreement: You are taking part in this research project voluntarily. You may revoke your consent at any time without giving reasons. Information and Data Privacy Statement In scientific studies, personal information about you is collected. The storage, analysis, and distribution of this study-related data follow in accordance with legal regulation. Participation in the study requires the following voluntary declaration of consent: 1. I hereby agree that the data collected in this study is recorded on survey forms and electronic storage media and processed without specifying names (anonymously). 2. I also declare my consent that authorized persons under confidentiality obligation (i.e.: the coordinator of the WYRED project) may view my collected personal data to the extent necessary for the project. For this measure, I release the participating researchers from their confidentiality obligation. Ms./Mr. ________________________ has explained to me in sufficient detail the content, procedure, and objectives of the above research project as well as the permission to view the data collected. I had the opportunity to ask questions and enough time to decide whether or not to participate in the project. I have received a copy of this informed consent form. I agree to participate in this research project. _______________________________________ ______________________________ (First name, family name in capital letters) Signature 25 If you have any questions, please contact [Partner contact details] Informed consent (parent/guardian) Title of the study: WYRED Information about the study: Short description of WYRED and invitation to participate. Phrasing adjusted to the target group. (about 150 words) Information and Data Privacy Statement In scientific studies, personal information about you is collected. The storage, analysis, and distribution of this study-related data follow in accordance with legal regulation. Participation in the study requires the following voluntary declaration of consent: 1. I hereby agree that the data collected in this study is recorded on survey forms and electronic storage media and processed without specifying names (anonymously). 2. I also declare my consent that authorized persons under confidentiality obligation (i.e.: the coordinator of the WYRED project) may view my collected personal data to the extent necessary for the project. For this measure, I release the participating researchers from their confidentiality obligation. Objectives, contents and procedure of the above-mentioned research-project as well as the right to get insight into the data accessed were explained to me in sufficient detail by Ms./ Mr________________________. The possibility to ask questions was sufficiently given an I had time enough to decide for or against the participation of my child in the project. I have received a copy of this informed consent. I agree to the participation of my child in the research project. _______________________________________________________ (First name and family name of the legal representative in capital letters) 26 _______________________________________________________ (Name and family name of the child or youth younger than 18) ___________________________________ ____________________________________ Place, Date Signature If you have any questions, please contact [Partner contact details] 27 Informed consent (young people 14-17) Name of the study: WYRED Mr./Ms. ____________________________ has explained to me, that he/she conducts this study, the contents of the study, how the study will be done and that he/she wants to get data from me. This data will be stored and electronically analysed. In order to do this, he/she needs my agreement. I was able to ask questions and had time enough to decide, whether I want to participate in the study or not. I understood that this data will be analysed anonymously, which means that nobody will get to know who I am. I know that I can revoke my agreement anytime and this will have no negative effects for me. I understood what he/she explained to me and I agree to participate in the study. I got a copy of this agreement. _______________________________________________________________________ (First name, family name in capital letters) ________________________ ______________________________________ Place, Date Signature of the minor 28 Informed consent (child under 14) Name of the study: WYRED Ms./Mr. has explained to me, that she/he wants to do research to learn more about children. She/he also told me how she/he will carry out this research and what I will be doing. I understood what she/he explained to me. I am ready to help her/him in her research and I agree, that she/he will use what I will do for her/his research. I know that she/he will tell other people what he/she found out in her/his research. However the people she/he will speak or write to about this research will not find out who I am. If I do not want to participate any more, I can stop anytime and nobody will be angry. I agree with this. So I sign here by writing or drawing. I either read what is written here myself or it was read to me. I understand what is written here. _________________________________________________________________________________________________ (First name, family name in capital letters, possibly written by the researcher or the caring person) _______________________ _____________________________________________________________ Place, date Signature or drawing done by the child 29 10 References García-Holgado, A., & García-Peñalvo, F. J. (2018). WYRED Platform, the ecosystem for the young people. Paper presented at the HCI International 2018, Las Vegas, NV, USA. https://youtu.be/TRDjN5boky8 García-Peñalvo, F. J. (2016a). WP3 WYRED Platform Development. Salamanca, Spain: GRIAL Research group. Retrieved from https://goo.gl/A98Q8v García-Peñalvo, F. J. (2016b). The WYRED project: A technological platform for a generative research and dialogue about youth perspectives and interests in digital society. Journal of Information Technology Research, 9(4), vi-x. García-Peñalvo, F. J. (2017). WYRED Project. Education in the Knowledge Society, 18(3), 7-14. doi:10.14201/eks2017183714 García-Peñalvo, F. J. (2018). WYRED una plataforma para dar la voz a los jóvenes sobre la influencia de la tecnología en la sociedad actual. Un enfoque de ciencia ciudadana. Paper presented at the II Congreso Internacional de Tendencias en Innovación Educativa (CITIE 2018), Arequipa (Perú). García-Peñalvo, F. J., & Durán-Escudero, J. (2017). Interaction design principles in WYRED platform. In P. Zaphiris & A. Ioannou (Eds.), Learning and Collaboration Technologies. Technology in Education. 4th International Conference, LCT 2017. Held as Part of HCI International 2017, Vancouver, BC, Canada, July 9–14, 2017. Proceedings, Part II (pp. 371-381). Switzerland: Springer International Publishing. García-Peñalvo, F. J., & García-Holgado, A. (2019). WYRED, a platform to give young people the voice on the influence of technology in today's society. A citizen science approach. In K. O. Villalba-Condori, F. J. García-Peñalvo, J. Lavonen, & M. Zapata-Ros (Eds.), Proceedings of the II Congreso Internacional de Tendencias e Innovación Educativa – CITIE 2018 (Arequipa, Perú, November 26-30, 2018) (pp. 128-141). Aachen, Germany: CEUR-WS.org. García-Peñalvo, F. J., García-Holgado, A., Vázquez-Ingelmo, A., & Seoane-Pardo, A. M. (2018). Usability test of WYRED Platform. In P. Zaphiris & A. Ioannou (Eds.), Learning and Collaboration Technologies. Design, Development and Technological Innovation. 5th International Conference, LCT 2018, Held as Part of HCI International 2018, Las Vegas, NV, USA, July 15-20, 2018, Proceedings, Part I (pp. 73-84). Cham, Switzerland: Springer. García-Peñalvo, F. J., & Kearney, N. A. (2016). Networked youth research for empowerment in digital society. The WYRED project. In F. J. García-Peñalvo (Ed.), Proceedings of the Fourth International Conference on Technological Ecosystems for Enhancing Multiculturality (TEEM’16) (Salamanca, Spain, November 2-4, 2016) (pp. 3-9). New York, NY, USA: ACM. García-Peñalvo, F. J., Vázquez-Ingelmo, A., & García-Holgado, A. (2019). Study of the Usability of the WYRED Ecosystem Using Heuristic Evaluation. In P. Zaphiris & A. Ioannou (Eds.), Learning and Collaboration Technologies. Design, Experiences. 6th International Conference, LCT 2019, Held as Part of the 21st HCI International Conference, HCII 2019, Orlando, FL, USA, July 26–31, 2019. 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