Project leader: Angela Brand
INSA participant: João Lavinha
Funding agency and dates: EU (DG Sanco), 2009-2011.
Background: PHGEN II fulfils a priority action of EU DG Sanco Health Programme by producing the first edition of “European Best Practice Guidelines for Quality Assurance, Provision and Use of Genome-based Information and Technologies”. It builds on the experiences of PHGEN I (Public Health Genomics European Network) which was a networking exercise to develop a common understanding of public health genomics between all stakeholders in Europe and which identified the need for coherent guidelines in that field. Since genetic determinants are hardly recognised as playing a key role in the understanding of diseases and target-oriented prevention, ongoing exchange of knowledge and best practice in this rapid growing field is needed. The project uses an interdisciplinary approach and reviews the available evidence from relevant European research and health action networks to avoid duplication of EU work and funding and to develop agreed-on best practice guidelines. Key experts such as public health experts, EU lawyers, human geneticists, ethicists, health technology assessment experts and patient groups are involved into PHGEN II. By this, the often seen gap of knowledge transfer between basic science, health services delivery and public health is minimized. PHGEN II follows the methodology of the public health trias (assessment, policy development, assurance) to ensure a timely and evidence-based development of guidelines which tackle both rare and common complex diseases.
Objectivos: The overall goal of this project is the development guidelines for quality assurance, provision and use of genome-based information and technologies in line with international standards and includes a public consultation process, a pilot evaluation of the guidelines and an endorsement panel.
Resultados esperados:
- To increase knowledge on quality assurance, provision and use of genome-based information and technologies.
- To better target future research.
- To bring political and administrative benefit both at the Member State and the Union levels.
- To bring benefit in the health sector by disseminating and implementing an existing intervention, namely genetic testing and other genome-based technologies.
Type of activity: Response to EU policy needs
Departament(s): Genetics Department
Thematic area: Genetic disease and functional genomics