formerly known as Public and Professional Policy Committee (PPPC)
The Policy and Ethics Committee (PEC) is an interdisciplinary Committee of the ESHG constituted at its 1997 annual meeting. At the time it became increasingly clear that fast technological developments called for thorough discussions and clear statements regarding their professional and societal ramifications.
It is the mission of PEC to contribute to the responsible translation of advancements in human genetics, and therefore its members aim
- to identify and discuss the ethical, social and policy issues related to human genetics and its application in research, clinical practice and laboratory genetic services.
- to be informed of various research projects, conferences and events, as well as policy initiatives and actions relating to those issues
- to inform and stimulate the discussion around these issues at meetings
- to address these issues and provide guidance through background documents, policy statements, recommendations or other publications
- to participate in the public and professional debate around these issues
- to inform, interact with and provide advice to national and international policy makers
Over the years numerous documents have been produced, often in collaboration with external experts. In some cases, draft documents are distributed to the ESHG membership for consultation. In all cases documents are to be endorsed by the ESHG Board. Recent publications are listed below.
Currently, the PEC is working on statements regarding opportunistic genomic screening, testing of children and on GDPR. The Committee collaborates with a range of other societies and organisations such as ASHG-Social Issues Committee, ELPAG and ESHRE.
The PEC meets twice a year. The ESHG President, Vice-President and President-Elect are ex-officio members. Since 2012, the PEC has a liaison member to the SPC.
The PEC has vacancies regularly for a new member who may serve a three-year term. In addition, external experts can request or can be invited to work on specific topics and become a PEC collaborator. For the composition of the group expertise in a range of subjects and professional backgrounds is taken into account; members should have experience with or proven interest in policy issues regarding genetics and be motivated to work on specific topics, most notably by preparing documents. Ideally members come from different regions in Europe.
ESHG members interested in becoming a PEC member are requested to send their CV and a letter of interest stating their expertise and motivation for joining to the Chair, Francesca Forzano Francesca.Forzano(at)gstt.nhs.uk.
ESHG members having suggestions for new topics to work on, or interested in working on a specific topic as a collaborator are also encouraged to contact PEC via the same email address.