Ethics

The FEEdBACk project is committed to ensure that all project activities are conducted in an ethically responsible manner. This is particularly important with regards to the involvement of users and their data, which is an essential component of the project.

The FEEdBACk project has therefor defined four ethical principles for interactions and work done in connection with the project:

• Respect for Persons: Respect for autonomy and personal integrity as well as for stakeholder’s perspectives and considerations. Besides that, FEEdBACk honour informed consent.

• Beneficence: Persons are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being.

• Justice: This point includes fairness and equity. The recruitment and selection of users to participate in the demonstrators must be fair and equal, and the voluntariness of users must be stressed (cf. Respect for Persons). Collected data from the demonstrators must not be used to discriminate or stigmatise any individual or social groups.

• Respect for law and public interest: Commitment to treat personal data with confidentiality and respect privacy. To do that, FEEdBACK complies with national and international regulations on privacy and data protection.

How will FEEdBACk recruit and select participants?

Inclusion/exclusion of users in the FEEdBACk demonstrators will be based on reasons directly related to the objectives of the project.

Participation in the project demonstrators is voluntary and follows from informed consent. The obtainment of informed consent must follow three consecutive steps:

1. Information: detailed information of the demonstrator, including potential benefits, risks and limitations, must be provided
2. Comprehension: The information must be given both verbally and written in clear lay language, in a precise and calm manner and in the proper context; users should be invited to ask any questions they may have.
3. Voluntariness: The informed consent form must stress that that participation is voluntary and that users are free to withdraw at any time at their own discretion and without any reprehension (and at no costs).

How will personal data be managed and protected?

• FEEdBACk will comply with the General Data Protection Regulation (GDPR) to protect the individual’s fundamental right to the protection of personal data

• Data processing will be done in accordance with the GDPR principles of fairness, lawfulness and transparency; purpose limitation; data minimisation; data quality; security, integrity and confidentiality will be implemented in the project

• Authentication and security certificates will be used to guaranteed high levels of data protection

• Pseudonymisation schemes will be used to prevent the direct association between the pilot participants and the exchanged information.

How will we guarantee the ethics requirements’ fulfillment?

Each demonstrator will appoint an Ethics Advisor to oversee that the involvement of users in the demonstrators is ethically sound. The Ethics Advisor will also work as the contact person for users if they have any concerns of an ethical nature.

The Ethics Advisor is responsible for handling all enquiries, including forwarding users to the Project Steering Committee and/or the Advisory Board as appropriate within 2 weeks upon receipt of the enquiry.