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. netWorked Youth Research for Empowerment in the Digital society Participant Protection Policy v2 WP1_D1.5 Participant Protection Policy v2 WYRED_WP1_D1.5 2 H2020-SC6-REV-INEQUAL-2016 Grant Agreement number: 727066 1st November 2016 – 30th September 2019 * cfr. GA – Annex I Part A – 1.3.2 WT2 – list of deliverable Deliverable description Filename WYRED_WP1_D1.5 Type R Dissemination level PU DOI 10.5281/zenodo.1137903 Due Date (in months) M12 Deliverable contributors Version No. Name, Institution Role Last update 1 D1.4 BOUNDARIES Nick Kearney 28/12/2016 2 D1.4 BOUNDARIES Nick Kearney, Sabine Zauchner-Studnicka, Mary O’Reilly, Anna Renau, Zuhal Yilmaz 20/01/2017 3 D1.4 BOUNDARIES Mary O’Reilly, Nick Kearney 21/02/2017 4 becomes D1.5 BOUNDARIES Nick Kearney 29/10/2017 Participant Protection Policy v2 WYRED_WP1_D1.5 3 History of Changes Version Date Section Description of changes 1 29.10.2017 Section 8 New section with the Ÿear 1 update 1 29.10.2017 Annexes - informed consent forms - Section 9: European legal framework - Paragraph for informed consent for recordings and images added to 9.1, 9.2 and 9.3 Participant Protection Policy v2 WYRED_WP1_D1.5 4 Contents 1 Introduction _______________________________________________________ 6 2 The ethics issues raised by the WYRED project ____________________________ 6 3 Engagement and Informed Consent _____________________________________ 8 3.1 Identification and recruitment of research participants. __________________________________ 8 3.2 Informed consent procedures ______________________________________________________ 9 3.3 Cases where informed consent is not possible ________________________________________ 10 4 Data Protection ____________________________________________________ 12 4.1 Overview ______________________________________________________________________ 12 4.2 Anonymisation of data ___________________________________________________________ 12 4.3 Off-line participant database ______________________________________________________ 13 4.4 Data profiling __________________________________________________________________ 14 4.5 Third party access _______________________________________________________________ 14 4.6 Social media and the wider Internet ________________________________________________ 14 4.7 Videos and images ______________________________________________________________ 15 4.8 Data and third countries __________________________________________________________ 16 4.9 GDPR _________________________________________________________________________ 16 4.10 WYRED Open Data Policy _________________________________________________________ 16 5 Safeguarding ______________________________________________________ 17 5.1 Vulnerable individuals/groups _____________________________________________________ 18 5.2 Measures taken to prevent the risk of enhancing vulnerability/stigmatisation _______________ 18 6 Diversity and pedagogical aspects. _____________________________________ 19 7 Approval and compliance ____________________________________________ 20 7.1 Internal approval ________________________________________________________________ 20 7.2 External Independent Ethics Advisor ________________________________________________ 20 7.3 Ethical approvals ________________________________________________________________ 20 8 Year 1 – update ____________________________________________________ 20 Participant Protection Policy v2 WYRED_WP1_D1.5 5 9 Annexes – informed consent forms ____________________________________ 21 9.1 Informed consent form (participant 18 or over) _______________________________________ 21 9.2 Informed consent (parent/guardian) ________________________________________________ 22 9.3 Informed consent (young people 14-17) * ____________________________________________ 23 9.4 Informed consent (child under 14) __________________________________________________ 24 10 References _______________________________________________________ 25 Participant Protection Policy v2 WYRED_WP1_D1.5 6 1 Introduction This document outlines the WYRED project (García-Peñalvo, 2016, 2017; 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 will inform all the activity in WYRED and will serve as one of the key reference points for the ethical review of the project. 2 The ethics issues raised by the WYRED project 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 project is research involving human participants, many of whom will be 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 will actually be carrying out the research activities. In this sense, they will be carrying out activities usually implemented by adults. As minors, some will be unable to provide informed consent and due to the focus on diversity in the project some of them will be 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: • 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 project involves the collection of personal data, and the time this will be 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 Participant Protection Policy v2 WYRED_WP1_D1.5 7 defined as sensitive by domestic law. This data and the participants will be subject to tracking and observation, and it is envisaged that further processing of the data will take place, both by the participants themselves and possibly third parties. Our strategy for data protection and management is described further on in this document. • Safeguarding. The participants in the research activities in the project will be 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 will be involved in the project 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 project 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 D2.1 which focuses especially on this issue. • Approval and compliance. In addition to the ethical issues described above, it is 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 is important to have an independent view of these considerations in the project and the degree to which they are taken into account, in order to complement the work carried out in relation to ethics by the consortium. 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 project that show how due attention to ethical considerations is baked in to the project design. 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. Secondly, ethics is an integral part of the work plan. Five of the 10 work packages explicitly provide for ethics- related work. In WP1 in the Definition of Processes, procedures such as the recruitment and informed consent of participants will be addressed, as well as safeguarding procedures, and this Participant Protection policy document. WP2 focuses on inclusion and will especially address issues relating to the ethics around diversity. In WP3 where the platform is built, close attention will be paid to data related issues and procedures such as Participant Protection Policy v2 WYRED_WP1_D1.5 8 anonymization. In WP9, the creation of the project management guidelines in WP9 Task 9.1 will specifically define RRI guidelines, which will foreground ethical issues and liaise where appropriate with existing projects in RRI such as RRI-Tools. Lastly in WP 10, the evaluation of the quality of the project will include a focus on the ethical dimensions of the project and an external ethics expert will be responsible for evaluating this aspect, and ensuring that the work complies with H2020 ethical standards. These five work packages constitute the infrastructure of the WYRED project and as can be seen, in each of them ethical considerations are taken into account and form an integral part of the work furthermore covering all of the ethical issues that the project raises, as set out above. Lastly, it is important to take into account that WYRED is itself an ethical project, since its central aim is to ensure that the young can exercise their right to be heard. Its focus is to take a very 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 is a fundamental objective of the project. 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 do create this safe space, in which diversity is celebrated, in order to give due attention to the ethical issues the project raises. However, we believe 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 plans introductory training 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 complement 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 3.1 Identification and recruitment of research participants. Participants will be 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 will also be presented directly to school children, youth groups, and students. The organisations contacted will be 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 are selected, and thus also to ensure the impact on the organization and local young people later on. Criteria for selection will include the following: • the profile of the participants Participant Protection Policy v2 WYRED_WP1_D1.5 9 • active involvement in partner organizations • their degree of motivation to take part in the project Moreover, gender balance will be a focus and the participation of young people with fewer opportunities will be encouraged. Since the process of incorporation of participants will be cyclical we will be able to adjust the recruitment focus and criteria to achieve a balance of different groups. To ensure appropriate diversity, a set of criteria will be defined in WP2. The following list is a starting point: • 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 is envisaged. • Geographic location: Representation according to the national population in the four categories (village, small, medium and big town) is 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 is 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 % 3.2 Informed consent procedures Each of the organisations participating in the consortium has an informed consent procedure in place. These vary in their complexity but are all informed by a set of basic principles, these are • the provision of appropriate and accessible information • promoting voluntary involvement • recognising the competence to make an informed decision The procedures also contain 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 • statement regarding video/photos • the nature of the participation in the project Participant Protection Policy v2 WYRED_WP1_D1.5 10 • 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 has developed informed consent procedures based on existing procedures the partners use and the forms to be used are included as Annexes to this document. The focus will be on maximum transparency to ensure that consent is fully informed. Four versions of the informed consent procedure will be produced, relating to the age of the individual and the right to sign the document. These include 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, this 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. 3.3 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 will obtain 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 will be providing this information even in cases where the individual cannot sign for themselves, with a focus on assent. In WYRED 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 Participant Protection Policy v2 WYRED_WP1_D1.5 11 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 acknowledge 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 will be facilitated and this will be revisited and checked throughout the process as their understanding of what is entailed will develop 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 will be employed. This will mean producing accessible information that will need 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 project. Where there are specific activities which may be more sensitive, such as video or photographs, we will include specific consent for these elements should be clearly outlined. The processes for the storage/destruction of these in relation to data protection are outlined below and will also be defined in WP1 along with the procedures and legal requirements in relation to child protection, in the Participant Protection deliverable. We will 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 will be explained to young children by practitioners who are familiar with their ways of communicating and in ways that they understand. Participant Protection Policy v2 WYRED_WP1_D1.5 12 4 Data Protection 4.1 Overview The WYRED process will involve collection and analysis of sensitive personal data and opinions. The consortium considers 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, are important to ensure the relevance and validity of the project outcomes. The activities will comply with Data Protection regulation in the countries where the activities will take place and EU regulations and directives / the highest ethical standards. Personal data will not be made public or given to a third party. The principle of confidentiality will be 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. 4.2 Anonymisation of data In order to put these principles into practice, we will implement the WYRED platform as follows. It will be a safe space in which all participants will have an anonymous identity which they choose when they enter the project. This will be linked to their personal data in a confidential database which will be off line and only accessible to a 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 leaving the project the personal data will be destroyed. The participants will be 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 is 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 will help the project to avoid incidences of abusive behaviour that can occur as a result of anonymity in online spaces. Though the registration protocol that will be used for the online platform will be defined in detail in WP3, when the platform is developed the following data protection criteria will be implemented. • Access to registration will be by invitation, and linked to our informed consent procedures. • In cases where the participant is under 18, the invitation will be supported by an adult with a family or educational link with the participant and the appropriate informed consent procedures. • All participants will fill out a registration form in data will be separated into three parts. o Information that will be used to create a digital identity, or avatar, for participation in the platform which will be totally independent of the real identity of the participant, in such a way Participant Protection Policy v2 WYRED_WP1_D1.5 13 that all the interactions in the platform will be anonymous, thus guaranteeing the freedom of expression necessary for full participation in the project activities. o Demographic and personal data. These will be stored in an off-line database to which only the coordinating partner will have 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 will be stored in encrypted form, off-line, which will be only 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 will have access to this information. Participants will be made aware of the existence of this link. • This decoupling of personal data from the project activity ensures that no data revealing the ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, health or sexual orientation of individuals will be processed, in accordance with Directive 95/46/EC of the EU Parliament and of the Council of 24 October 1995, Article 8. 4.3 Off-line participant database The participant database, which contains the demographic and personal data of the users will be regulated by the Spanish Personal Data Protection Law 15/1999 since this database will be 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 will be made clear to all interested parties and established as a regulation. In addition to these considerations derived from the Spanish law, the following will also apply: • The data collected will be accurate and up to date and only adequate, relevant and not excessive amounts of data will be collected in addition to these considerations derived Participant Protection Policy v2 WYRED_WP1_D1.5 14 • 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 will never be used in ways which allow the individual to be identified (e.g. publicity material must not give a full name and address). 4.4 Data profiling With regard to data profiling, our activity is 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 will be paramount - all data will be anonymised and the database linking profiles to real data will be offline, with connections only 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 will only be saved as long as a participant is actively participating in the project in conformance with provisions of the forthcoming General Data Protection Regulation (although this will not officially come into force till 2018). In this way, all profiling that takes place in the WYRED project will be anonymous. 4.5 Third party access Third party access, for example by researchers to the data generated in the project, will be subject to an approval process, within the context of a policy of open data. Written applications for approval will 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 will be the anonymised data, never the personal data. 4.6 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 will be 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 with or on behalf of the WYRED project 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. Participant Protection Policy v2 WYRED_WP1_D1.5 15 • If a profile or group is set up directly related to WYRED activities it is essential that a member of the consortium (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 the project, participants will be 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 will be 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 the WYRED project. 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 consortium 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) 4.7 Videos and images Given the importance of video and images in the digital lives of children and young people, it is highly probable that some of their research activities will involve the creation of images and videos, and that these may include themselves, though the initial training in WP4 will address these issues and the implications of this. We anticipate two main levels of privacy. The first refers to videos created for and within the platform. In these cases, as with all communication, there will be no linkage to real personal data. In other words, images and recordings of children under the age of 18 will not be 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 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 will be extremely alert and sensitive to child protection issues, which include: Participant Protection Policy v2 WYRED_WP1_D1.5 16 • 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 will be 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 team will provide 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 in WP7 and WP8 which will be publicly available. In all cases these will be created in such a way as to avoid revealing the identities of the participants. 4.8 Data and third countries With regard to Israel and Turkey we will take into account the future GDPR (General Data Protection) provisions, though our stance on anonymization as can be seen above, goes beyond that legislation. The procedures we outline will apply to all partners, including the Israeli and Turkish partners and in this way the whole project consortium is committed to the highest ethical standards. The data circulating within the project is already anonymised as all participants have an avatar within the system. In this way, it will not be 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 will be governed by an approval process. 4.9 GDPR Provision will be made for this legislation coming into effect by implementing measures beyond its requirements from the start of the project. The training provided to participants in WP4 will also make reference to this regulation as a benchmark for privacy and data protection in Europe. In particular, as mentioned above the “right to erasure” provision will be fully satisfied, and personal data will be destroyed at the end of each individual’s involvement with the project. 4.10 WYRED Open Data Policy It is a partnership commitment that all WYRED resources, after the implementation of anonymisation processes, will be publicly available through open access policies, including the datasets and data results. All published data belonging to the consortium will be made available under Creative Commons licences which will be Attribution- NoDerivs CC BY-ND, or less restrictive, and participants will be encouraged to use these as well. Open standards for data and documents will be used in all publications. The project will make efforts to make this data available where possible to post-graduate researchers across Europe and engage them in the WYRED community, subject to the considerations outlined above (use of an avatar, Ethical Advisory Board approval). This will be done Participant Protection Policy v2 WYRED_WP1_D1.5 17 principally through yearly calls for expressions of interest and the invitation to participate directly on the platform. Responsible Research and Innovation (RRI) guidelines designed in WP7 will include specific information on how to handle all data that will be 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 will also be defined and agreed in a consortium agreement contained within the project handbook defined in WP9). This will set out the conditions which determine public facing project activities, IPR, publishing policy, and data management, to ensure that this is oriented towards the support of the WYRED platform. It will be 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 will be to define a safeguarding protection policy for children and young people for the WYRED project, which will bring together the different policies of the different partners, focusing particularly on those policies that afford most protection. This will include 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 will underlie the safeguarding and protection policy in WYRED are as follows: • The welfare of a child or young person will always be paramount. • 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. Participant Protection Policy v2 WYRED_WP1_D1.5 18 5.1 Vulnerable individuals/groups The project will aim 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 will also be sought. To ensure heterogeneity in the project and give these groups the opportunity to be heard, it is important that they are adequately represented. We will therefore make every effort to ensure that vulnerable groups are fully represented in the project, and that the resulting datasets can be disaggregated by gender and other relevant categories, and we will make all reasonable effort to ensure the inclusion of participants from marginalized populations. This will be a key part of the work in WP2, which focuses on inclusion and we will take particular care to use strategies that minimize or mitigate the impact of barriers to the participation of women, in order to ensure that their voices are heard and their opinions/experiences are accurately and fully represented. Special attention will be paid to taking women’s particular needs into consideration during the entire data lifecycle. 5.2 Measures taken to prevent the risk of enhancing vulnerability/stigmatisation As stated above, the WYRED project will focus on working to ensure the involvement of young people with fewer opportunities and coming from vulnerable groups and backgrounds. As we have indicated, we will 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. The WYRED partners have experience in working with heterogeneous groups and contexts, and as we have mentioned the project has a special focus on inclusion through WP2. In particular this will focus on the fact that 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 no 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 will focus on prevention of the risk of enhancing vulnerability. Part of the definition of processes in WP1 will further define inclusive and non-stigmatizing measures to ensure the full involvement and participation of vulnerable individuals and groups within the whole process, but our initial considerations are as follows. All WYRED activities 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 will have minimum standards in place intended to minimise this risk: • At least one adult involved with all activities will have clearly defined responsibilities for Child Protection. • This Participant Protection Policy will be available to all personnel working on WYRED activities, including the participants themselves. Participant Protection Policy v2 WYRED_WP1_D1.5 19 • As mentioned previously, children and young people are introduced to the policy during the informed consent/assent process and the initial training process in WP4. • 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. • A risk assessment will be 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 will take into account usability and accessibility issues for all the groups involved, and these will participate in testing • Child friendly complaint mechanisms are in place and widely publicised. • Direct feedback from participants is sought throughout the process. Ultimate responsibility for ensuring these standards are applied in practice lies with the project coordinator. However, it is important to stress that child safeguarding is a shared responsibility. All staff and partners working with children should take personal responsibility for upholding these minimum standards. 6 Diversity and pedagogical aspects. WYRED focuses on giving a wide range of different young people a voice. The group of participants will therefore be naturally heterogeneous, with different capacities for self-expression and participation that will 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 will be asked to agree to a set of community guidelines. This will be drawn up as part of the Training actions to be developed in WP4 with the support of the Inclusion team, and will 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. Participant Protection Policy v2 WYRED_WP1_D1.5 20 • 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. As in the case of informed consent, different wording will be developed for different age groups. At the start of their participation, they will be 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 7.1 Internal approval An Ethics Advisory Board (EB) will be established in WP10 and will ensure the alignment of tasks and activities within the ethical requirements and procedures established in WP1. The EAB will be made up of a representative of each partner. The Ethical Board will also be consulted during the project whenever potential ethical issues arise. Partners will have to seek permission from the EAB before conducting any new activities that emerge during the project that are of an ethically sensitive nature. 7.2 External Independent Ethics Advisor An external and independent ethics advisor will be appointed to oversee the ethical concerns involved in this research. Reports will be produced at M12, M24 and M36 by this advisor, and submitted to the EC with the financial reports. This work will be assigned to WP10 and a subcontracting budget is assigned to WP10 for this purpose 7.3 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 will be submitted to the European Commission by the coordinator. At the time of writing this process has already been initiated. 8 Year 1 – update At present (October 2017) no changes to this document are seen as necessary, just minor details have been improved as described in the “History of changes” table. Continuous revision will take place throughout Year 2 and any changes made as required. Participant Protection Policy v2 WYRED_WP1_D1.5 21 9 Annexes – informed consent forms The consent forms attached are models, that each partner will translate and localise to ensure full comprehension by the participants. The models provided here are provisional and may be adapted as the work progresses. Updated versions will be added in the annexes. European legal framework Art. 8 REGULATION (EU) 2016/679 OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) http://eur-lex.europa.eu/legal-content/ES/ALL/?uri=CELEX:32016R0679 , Conditions applicable to child's consent in relation to information society services: “Where point (a) of Article 6(1) applies, in relation to the offer of information society services directly to a child, the processing of the personal data of a child shall be lawful where the child is at least 16 years old. Where the child is below the age of 16 years, such processing shall be lawful only if and to the extent that consent is given or authorised by the holder of parental responsibility over the child. Member States may provide by law for a lower age for those purposes provided that such lower age is not below 13 years.” 9.1 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. Participant Protection Policy v2 WYRED_WP1_D1.5 22 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. I give permission / I give not permission for photographs/video/sound recordings of me to be captured and used in printed and electronic media, including the internet, for teaching and research/dissemination purposes of the project. _______________________________________ ______________________________ (First name, family name in capital letters) Signature If you have any questions, please contact [Partner contact details] 9.2 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 Participant Protection Policy v2 WYRED_WP1_D1.5 23 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. I give permission / I give not permission for photographs/video/sound recordings of my child to be captured and used in printed and electronic media, including the internet, for teaching and research/dissemination purposes of the project. _______________________________________________________ (First name and family name of the legal representative in capital letters) _______________________________________________________ (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] 9.3 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. Participant Protection Policy v2 WYRED_WP1_D1.5 24 I give permission / I give not permission for photographs/video/sound recordings of me to be captured and used in printed and electronic media, including the internet, for teaching and research/dissemination purposes of the project. I got a copy of this agreement. _______________________________________________________________________ (First name, family name in capital letters) ________________________ ______________________________________ Place, Date Signature of the minor * According to the national rules on Data Protection Policy for under 16 in the EU Countries or according to the national rules for under 18 in the no EU Countries. 9.4 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) Participant Protection Policy v2 WYRED_WP1_D1.5 25 _______________________ _____________________________________________________________ Place, date Signature or drawing done by the child 10 References García-Peñalvo, F. J. (2016). 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., & 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. Griffiths, D., Kearney, N. A., García-Peñalvo, F. J., Seoane-Pardo, A. M., Cicala, F., Gojkovic, T., . . . Zauchner- Studnicka, S. (2017). Children and Young People Today: Initial Insights from the WYRED Project. European Union: WYRED Consortium. Retrieved from http://repositorio.grial.eu/handle/grial/990. doi:10.5281/zenodo.996356