D2.6 - Third report of the Ethics Advisory Board (EAB)
After the last two previous meetings of our Ethics Advisory Board (EAB) -which resulted in reports D2.2 and D2.4-, the EAB members were presented with the updated position with regards to the project objectives and progress, the data protection and ethics oversight and assessments for the project. In this period, GenoMed4All focused its efforts on the finalisation of the Joint Controller Agreements (JCAs), enhancement of the Federated Learning architecture and development of the recommendations on the ethical principles, quality processes and stakeholder engagements for AI development as can be found in deliverable D2.5.
Abstract
Deliverable 2.6 provides the third report of the Ethical Advisory Board for GenoMed4All. The 3rd Meeting took place on Monday 20th November 2023 and provided an opportunity for the project to update the EAB external members on the latest developments over 2023. The key points of development included the completion and signing and execution of three Joint Controller Agreements for each of the Use Cases, further technical developments that place the majority of personal data processing on a Federated Learning infrastructure and finalisation of the approach to develop the Ethical Principles and Quality Assurances for Deliverable 2.5. There was also reflection on the recently enacted Data Governance Act and the forthcoming AI Act and regulations around the European Health Data Space.
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D2.5 - Recommendations on the ethical principles, quality processes and stakeholder engagements for AI development
Deliverable 2.5 describes the ethical principles for GenoMed4All and similar AI driven projects and interventions for managing and risk assessing rare Haematological diseases. This description of principles draws from the European Commission Ethics Guidelines for Trustworthy Artificial Intelligence.
Abstract
Deliverable 2.5 summaries the proposed ethical principles for GenoMed4All and wider multi-omics and clinical data driven projects for rare diseases that involve the training and development of risk prediction and outcome measure algorithms that leverage artificial intelligence. D2.5 goes on to describe the approaches for stakeholder engagement (including clinical practitioners and sites, development teams, AI researchers and patient associations and the wider citizenry). This includes quality processes derived from the ethical principles where consideration of the ethical challenges around autonomy, bias and transparency in data use amongst others are pertinent.
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D2.4 - Second report of the Ethics Advisory Board (EAB)
Deliverable 2.4 provides the second report of the GenoMed4All Ethical Advisory Board (EAB). This report has been compiled after the first meeting of our Ethics Advisory Board (EAB) held on 19th January 2022 -a recap can be found here-, and a subsequent set of meetings in November 2022.
Abstract
Following the completion of the previous meeting and submission of D2.2, GenoMed4All focused its efforts on developing the mapping and ethical principles identified in the previous meeting, but had to address as a priority the changing expectations around GDPR compliance and development of the data sharing agreements. Identification of the roles of GenoMed4All partners had to be prioritised, and a new Joint Controller Agreement Template had to be agreed by the partners. This underpinned the compliance requirements that were being overseen by the EAB. Due to regulatory changes and evolved interpretations in several jurisdictions, including France and Italy respectively, the agreements and approaches had to be updated.
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D2.2 - First Report of the Ethics Advisory Board
Following the introductory meeting of our Ethics Advisory Board (EAB) -you can read all about it here-, their first report (D2.2) has been publicly released.
Abstract
This deliverable provides the first report of the GenoMed4All Ethical Advisory Board (EAB). The report has been compiled after the first meeting of the Ethical Advisory Board held on 19th January 2022. The meeting was presented with the current position with regards the project objectives and progress, data protection and ethics oversight and assessments for the project.
Photo by Fábio Lucas on Unsplash
A first meeting for GenoMed4All's Ethics Advisory Board
Our Ethics Advisory Board convened yesterday for the very first time in our project and we could not have asked for better company! We had the opportunity to present an overview of GenoMed4All's first year of work for the consideration of our experts Mahsa Shabani, Paul Timmers and Nikolaus Forgó, who in turn provided some valuable directions and thoughtful insights on how to ensure that privacy and trustworthiness of AI models are at the forefront of our efforts to bring personalized care to hematological diseases.
Learn more about our experts' profiles here in our dedicated Advisory Board section!
Networking with the 1+ Million Genomes initiative
On December 15th, we had the pleasure of attending a meeting hosted by Szymon Bielecki (EC DG CONNECT - Unit H3: eHealth, well-being and ageing) with the cluster of EU-funded projects on the topic of AI for Genomics and Personalised Medicine - PANCAIM, INTERVENE and KATY on the 1+ Million Genomes initiative, which brings together 22 European countries, the UK and Norway with the goal of making at least 1 million sequenced genomes accessible in the EU by 2022.
This was a great opportunity to directly interact and discuss ethics and legal concerns (mainly on data sharing) with representatives from the B1MG (Beyond 1 Million Genomes) and their working group on Ethical, Legal and Social Issues (ELSI).
Check out their work here and stay tuned for more updates on this collaboration!