Scientific Projects

Dissertation - Who Owns Your DNA?

Joint PhD from Leiden University Law School and Leiden University Medical Centre, published by Brill publishers as:
Property Rights in Blood, Genes & Data: Naturally Yours?

Present and Past Projects

  • Co-creating and delivery of an online Software as a Service (SaaS) tool to handle GDPR Compliance, GDPR Contracts and GDPR Data Subject Requests, with a focus on health and biomedical data;
  • Advising on legal and regulatory aspects of the EU 1 Million Genomes Project;
  • Advising the Global Alliance for Genomics and Health and the GDPR and Ethics Working Groups of the Human Cell Atlas;
  • Counselling on the governance and legal aspects of major European Longitudinal Prospective Population Cohorts;
  • Designing and negotiating cross border material transfer and data access agreements, between academia, population cohorts and industry, enabling compliant sharing of biomedical research data with collaborators across the globe;
  • Partner in EU funded FP7 and H2020 projects, including Tiss.EU, BioSHaRE, BBMRI LPC and EU CelLex.
  • Advising to the Human Genome Organisation (“HUGO”) and Sage BioNetworks (USA)
  • Counselling to public health institutes and registries on data subject requests for access and retrieval of their data.
  • Co-founding (in 2007) and collaborating (to date) with the Biobanking and Biomolecular Research Infrastructure Netherlands and Europe (BBMRI NL and BBMRI ERIC);
  • Analyzing and co-drafting the OECD Guidelines for Large-Scale Population Databases.

Lecturer, Trainer and Teacher of Medical Students and Health Professionals

Recurring invitations to speak around the globe continue to provide an opportunity to reach out and engage with professionals and audiences from different cultural backgrounds, facing unique health issues. Being a visiting lecturer at the Summer School of the Groningen Academic Medical Centre Biobank enables me to connect with and learn from young health professionals and a new and diverse generation of biomedical scientists from around the world. In addition, I served on the Institutional Review Boards (Dutch Cancer Institute and Dutch National Pathology Archives).