Precision Medicine (ongoing)

Governance of the Collection, Access and Use of Human Genetic Information for Precision Medicine

Precision Medicine is an emerging field for disease diagnostic, prevention and treatment, which takes into account individual variability in genes, environment and lifestyle. The sequencing and analysis of individual genomes will become a commodity, paving the way to Precision (data-driven) Medicine to become a major industry in the future, particularly as the health-maintenance industry increasingly engages in an anti-aging agenda. Precision Medicine can identify predisposing genes and risk factors (diagnostic), tailor prevention program (life style, nutrition, drugs), continuously record various bio-parameters by integrated biosensors (watches, glasses, contact lenses, clothes…), and ultimately improve therapeutic treatment (curation), including gene therapies, and regenerative and reproductive medicine. Expectations for Precision Medicine are high, and science and industry are embarking massively on this route, supported by important governmental initiatives.

Project steps:

As part of this project, IRGC published a roadmap for the development of precision medicine. It recommends key elements to consider in the development of national and multi-stakeholder initiatives for data-driven personalised medicine that would:

  • Work to create favorable context conditions by engaging early with the medical sector, industry, citizens, patients, regulators and payers
  • Implement precision medicine in stages, depending on the level of certainty of the science and on cost
  • Address data issues, regarding type and quality, consent, privacy and confidentiality, sharing and interoperability, and biobanks
  • Plan to reform regulation, with a view to make space for planned adaptive authorisation and performance-based reimbursement