Domain Ambassador for ethics & law

What:

The RDA / EOSC Future Ambassador for Ethics & Law has the goal of advancing the understanding of the European Open Science Cloud Future Project with scientists and research institutions, as well as with patients, communities, health advocates, and the public, providing important emphasis on those instances otherwise underrepresented in initiatives for Open Science. The ambassadorship includes outreach to institutions and people. This includes public and private institutions that are engaged with processing research data and eventually finding repositories for that data, publishing the data and the finding from the data, and/or sharing or re-using data.

Who:

Francis P. Crawley, Executive Director of the Good Clinical Practice Alliance – Europe (GCPA) and the Strategic Initiative for Developing Capacity in Ethical Review (SIDCER) located in Leuven, Belgium.

Biography:

Francis P. Crawley is a philosopher specialized in research ethics and methodology, integrity, and data/AI ethics & law. He is the Executive Director of the Good Clinical Practice Alliance – Europe (GCPA) and the Strategic Initiative for Developing Capacity in Ethical Review (SIDCER) located in Leuven, Belgium. He has been a member of the Research Data Alliance’s (RDA) Legal and Ethics Working Group and the Community Participation Working Group. He recently launched and chairs the Artificial Intelligence and Data Visitation Working Group (RDA AIDV-WG). He is also a member of the Research Data Publishing Ethics Working Group with FORCE11 & The Committee on Publication Ethics (COPE), the Pistoia Alliance, Regulatory and Ethics Work Stream of the Global Alliance for Genomics & Health (GA4GH-REWS), and the Data Stewardship Working Group of the Virus Outbreak Data Network (VODAN) GO-FAIR. He brings substantial experience (UNAIDS, WHO, WMA, UNESCO, and others, including local organizations and industry) in developing health-related research projects, collaborative engagements, regulatory and policy outreach, and education and training in Europe, Africa, Asia, the Americas, and Eastern Europe & Central Asia. He has played a leading role in the development of international and national guidelines, capacity-building, empowerment, and education programmes for health research, including GCP, ethics review systems, and data privacy & management (a GDPR DPO), with expertise in the ethics of ML & AI. Recently he launched the Ukraine Clinical Research Support Initiative (UCRSI) that includes a workstream on clinical research data in conflict situations. 

Scientific Domain:

Ethics & Law

Your Domain specific Engagement:

  • Ethics & Science Advisory Board of the EU-funded project ‘European Corona Vaccine Trial Accelerator Platform (VACCELERATE)’ (Horizon Europe Grant agreement ID: 101037867) 
  • BGI Dialogues on Science, Philosophy, and Society; Shenzhen, China 
  • OPENCORONA: A DNA vaccine platform against SARS-CoV-2 (Horizon Europe Grant agreement ID: 101003666) 
  • Global Alliance for Genomics and Health (GA4GH), Regulatory & Ethics Work Stream (REWS)
  • IMI2-funded project ‘Modern approaches for developing antivirals against SARS-CoV 2 (MAD-CoV 2) (Grant agreement number: 101005026)
  • IMI2-funded project ‘Viral haemorrhagic fever: modern approaches for developing bedside rapid diagnostics (VHFMoDRAD)’ (Grant agreement number: 823666)
  • IMI2-funded project ‘conect4children - Collaborative network for European clinical trials for children (c4c) (Grant agreement number: 777389) 
  • Global Forum for Research Ethics & Integrity (GFREI) 
  • International Data Week (IDW) 2022 & RDA 19th Plenary; Seoul, South Korea 
  • Bioethics Education International Summer School 2022; New York, New York, USA 
  • DIA/UCRSI Webinar Series: A World in Crisis: Global Impacts [on Clinical Research] of the Conflict in Ukraine (forthcoming Special Issue Global Forum (March 2023) 
  • European Forum for Good Clinical Practice (EFGCP), eConsent Working Group 
  • IFAPP Ethics Working Group 
  • Pistoia Alliance 
  • AVAC/PHASES Think Tank to Advance HIV Prevention Research in Pregnant and Lactating Populations 

Your Promotion and Networking:

Francis and his activities are also featured on the RDA website.

Your Connection to RDA WG/IG or CoP:

  • Co-chair, EOSC-Future / RDA Artificial Intelligence & Data Visitation Working Group (AIDV-WG) 
  • RDA COVID-19 Working Group 
  • RDA COVID19-Legal-Ethical 
  • FAIR for Machine Learning (FAIR4ML) IG 
  • Health Data Interest Group 
  • Active Data Management Plans IG 
  • Discipline-specific Guidance for Data Management Plans WG 
  • DMP Common Standards WG 
  • FAIRsharing Registry: Connecting data policies, standards and databases RDA WG 
  • Life Science Data Infrastructures IG 
  • Working and Interest Group Chairs 

Country:

Belgium