Consulting
Group

Ethics, Privacy and
Data Protection

Research and innovation
projects
We take part in a range of projects, bringing expertise in research ethics, privacy, and data management

i-Consent

Improving the guidelines for Informed Consent, including vulnerable populations, under a gender perspective

Grant Agreement No.
741856

Budget
€ 3 million

Website
https://i-consentproject.eu/


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Project Description

The informed consent process in clinical trials allows research participants to voluntarily decide whether or not to take part in a research activity. However, informed consent documents are often long, difficult to read, and seem to focus more on protecting the interests of the research sponsors than the participants. Improvements to standard informed consent processes are urgently required. The i-Consent project aims to address this need by developing guidelines on informed consent that pay greater attention to the actual needs of prospective participants, to engaging citizens in the design of processes, to improving health literacy, and to gender and ethics considerations.

Our role

AND is leader of Work Package 1 (A multi-layered approach to informed consent). This WP investigates techniques for improving informed consent and examines the key determinants of participants’ attitudes toward informed consent processes. In WP2, AND provides detailed analysis of ethical, privacy and data protection issues associated with the use of ICT for obtaining informed consent. In March 2020 we organised an international workshop on ethical issues in informed consent. AND has also developed a self-assessment tool enabling early identification of weaknesses, gaps, and risks in informed consent processes.


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Focus

Forced displacement and refugee-host community solidarity

Grant Agreement No.
822401

Budget
€ 3 million

Website
https://www.focus-refugees.eu/


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Project Description

At the height of the refugee crisis in 2015, tens of thousands of people were fleeing their home countries every day to escape war, persecution, and oppression. Over 1 million migrants and asylum seekers arrived in Europe that year. This has had a profound impact on the lives of migrants, but also on the lives of the host communities where migrants live as refugees. Today, the number of asylum seekers reaching Europe has dropped dramatically but the challenges remain. The EU-funded FOCUS project studies the socio-psychological dimensions of refugee and host-community relations and analyses the socio-economic integration of refugees and what this means for host societies. FOCUS seeks solutions for host communities to increase tolerance, facilitating peaceful coexistence and reduced radicalisation across Europe and the Middle East.

Our role

AND is responsible for the ethics and privacy management in FOCUS, including the coordination of the Ethics Advisory Board. Our key tasks involve elaboration of the Ethics and Data Management Plans, as well as development of research ethics validation procedures for field research and pilot testing activities in the project.


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dRural

The service marketplace for European rural areas

Grant Agreement No.
101017304

Budget
€ 15 million

Website
https://drural.eu/


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Project Description

dRural aspires to establish the service marketplace of reference for European rural areas by co-developing and implementing a digital solution that delivers multiple services to rural citizens while creating opportunities for economic growth and quality of life improvements. The solution will be set up in four European regions, guaranteeing its personalization and customization to local needs, and integrating with the local service providers. In parallel, an ecosystem of relevant players will be created in each region by identifying the key stakeholders, current problems, and designing a value proposition for each of them. Solution development follows agile methodologies and ensures end-users co-creation and validation in each regional demonstrator. dRural will be developed with a 'by-design' approach to ethics, privacy, and data protection.

Our role

AND leads Work Package 2: Ethics, Privacy and Data Protection. The objectives of this WP are:

  • to coordinate and oversee research ethics management of the project;
  • to ensure that the dRural meta-platform, marketplaces, and services are developed in conformity with fundamental principles of ethics, privacy, and data protection;
  • to develop a ‘by-design’ approach to ethics, privacy, and data protection that can be conveniently incorporated into the development of the meta-platform, marketplaces, and services;
  • and to produce ethics and data protection guidelines for the marketplace and service developers and providers.


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i-Consent

Improving the guidelines for Informed Consent, including vulnerable populations, under a gender perspective

Grant Agreement No.
741856

Budget
€ 3 million

Website
https://i-consentproject.eu/

Project description

The informed consent process in clinical trials allows research participants to voluntarily decide whether or not to take part in a research activity. However, informed consent documents are often long, difficult to read, and seem to focus more on protecting the interests of the research sponsors than the participants. Improvements to standard informed consent processes are urgently required. The i-Consent project aims to address this need by developing guidelines on informed consent that pay greater attention to the actual needs of prospective participants, to engaging citizens in the design of processes, to improving health literacy, and to gender and ethics considerations.

Our role

AND is leader of Work Package 1 (A multi-layered approach to informed consent). This WP investigates techniques for improving informed consent and examines the key determinants of participants’ attitudes toward informed consent processes. In WP2, AND provides detailed analysis of ethical, privacy and data protection issues associated with the use of ICT for obtaining informed consent. In March 2020 we organised an international workshop on ethical issues in informed consent. AND has also developed a self-assessment tool enabling early identification of weaknesses, gaps, and risks in informed consent processes.

Read more

Focus

Forced displacement and refugee-host community solidarity

Grant Agreement No.
822401

Budget
€ 3 million

Website
https://www.focus-refugees.eu/

Project description

At the height of the refugee crisis in 2015, tens of thousands of people were fleeing their home countries every day to escape war, persecution, and oppression. Over 1 million migrants and asylum seekers arrived in Europe that year. This has had a profound impact on the lives of migrants, but also on the lives of the host communities where migrants live as refugees. Today, the number of asylum seekers reaching Europe has dropped dramatically but the challenges remain. The EU-funded FOCUS project studies the socio-psychological dimensions of refugee and host-community relations and analyses the socio-economic integration of refugees and what this means for host societies. FOCUS seeks solutions for host communities to increase tolerance, facilitating peaceful coexistence and reduced radicalisation across Europe and the Middle East.

Our role

AND is responsible for the ethics and privacy management in FOCUS, including the coordination of the Ethics Advisory Board. Our key tasks involve elaboration of the Ethics and Data Management Plans, as well as development of research ethics validation procedures for field research and pilot testing activities in the project.

Read more

dRural

The service marketplace for European rural areas

Grant Agreement No.
101017304

Budget
€ 15 million

Website
https://drural.eu/

Project description

dRural aspires to establish the service marketplace of reference for European rural areas by co-developing and implementing a digital solution that delivers multiple services to rural citizens while creating opportunities for economic growth and quality of life improvements. The solution will be set up in four European regions, guaranteeing its personalization and customization to local needs, and integrating with the local service providers. In parallel, an ecosystem of relevant players will be created in each region by identifying the key stakeholders, current problems, and designing a value proposition for each of them. Solution development follows agile methodologies and ensures end-users co-creation and validation in each regional demonstrator. dRural will be developed with a ‘by-design’ approach to ethics, privacy, and data protection.

Our role

AND leads Work Package 2: Ethics, Privacy and Data Protection. The objectives of this WP are: (i) to coordinate and oversee research ethics management of the project; (ii) to ensure that the dRural meta-platform, marketplaces, and services are developed in conformity with fundamental principles of ethics, privacy, and data protection; (iii) to develop a ‘by-design’ approach to ethics, privacy, and data protection that can be conveniently incorporated into the development of the meta-platform, marketplaces, and services; and (iv) to produce ethics and data protection guidelines for the marketplace and service developers and providers.

Read more

Contact us for more information on how we can support your research.