Collection and Use of Human Genetic Information for Precision Medicine

On 28-29 August 2015, IRGC organised an exploratory workshop on governance issues associated with the collection, access and use of human genetic information for precision medicine. The workshop was organised with Tsinghua University, MIT and École Polytechnique Fédérale de Lausanne (EPFL). It was attended by academics and representatives from industry and regulators.

Summary “highlights from the workshop” are available here

The workshop discussed:

  • the scientific and technical landscape, to identify risk and benefit governance issues in the development of precision medicine,
  • the economic and regulatory landscape, to describe and assess commonalities and differences in how China, India, the US and Europe regulate developments in precision medicines and manage access and use of genomic data and
  • current and future policy initiatives and research needs, focusing on the need to foster effective adaptive regulation of benefits and risks of precision medicines and genomic data access and use.

IRGC’s work on precision medicine will continue in 2016 with a session at the conference on Planning Adaptive Regulation (London, 7-8 January), further dialogue with various stakeholders, analysis of various governance options and discussion at a second expert workshop.