WP7 Ethics, Legal and Societal Issues

Objectives

The general objective of WP7 consists in the development of a harmonised, agreed and realisable ethical, legal and social framework for the establishment and operation of a European sequencing and genotyping infrastructure. We will propose strategies to implement the framework in practice. We will specifically:

  1. Oversee ethical and corresponding legal and social aspects (ELSI) in setting up and operationalising the infrastructure. This especially concerns biological samples and data management (tasks of WP4 and WP5).
  2. Organise the necessary procedures and templates to assess from the ethical and legal point of view the transnational project proposals submitted to the facility.
  3. Provide an information resource on those issues with web access for professionals and the public in relation with WP6.
  4. Establish synergy with ELSI work of other relevant EU projects and infrastructures (e.g. BBMRI and ELIXIR).
  5. Provide material for training in the domain of ELSI for WP6.
  6. Explore ethical issues related to availability and sharing of data from emerging high throughput genomics technologies as these evolve (for example in the frame of WP10).
  7. Encourage the debate on societal aspects of high throughput sequencing technologies.
  8. Deliver proposals for long term sustainability of the ethical framework of the infrastructure.

WP Leader

Dr. Anne Cambon-Thomsen, INSERM Toulouse (FR)

WP Partners