The Public and Professional Policy Committee (PPPC)
Members of the PPPC 2015-2016
|3-year term ends||Term|
|Caroline Benjamin (Lancashire, United Kingdom)||2018||1st|
|Angus Clarke (Cardiff, UK)||2019||1st|
|Martina Cornel (Amsterdam, The Netherlands) - Chair||2017||4th|
|Guido de Wert (Maastricht, The Netherlands)||2018||1st|
|Florence Fellmann (Lausanne, Switzerland)||2018||2nd|
|Francesca Forzano (Genova, Italy) - Co-Chair||2017||3rd|
|Heidi Howard (Uppsala, Sweden)||2018||2nd|
|Hulya Kayserili (Istanbul, Turkey)||2017||2nd|
|Bela Melegh (Pecs, Hungary)||2018||1st|
|Alvaro Mendes (Porto, Portugal)||2018||1st|
|Markus Perola (Helsinki, Finland)||2019||1st|
|Dragica Radojkovic (Belgrade, Serbia)||2018||2nd|
|Emmanuelle Rial-Sebbag (Toulouse, France)||2017||1st|
|Carla van El (Amsterdam, The Netherlands) - Secretary General||2019||1st|
What do we do?
The Public and Professional Policy Committee (PPPC) 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 PPPC 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 PPPC is working on statements regarding preconceptional carrier screening and post mortem genetics. The Committee collaborates with a range of other societies and organisations such as ASHG-Social Issues Committee, EMPAG and ESHRE
The PPPC has vacancies every year for one or two new members who may serve two to a maximum of three three-year terms. In addition, external experts can request or can be invited to work on specific topics and become a PPPC 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.
The PPPC meets twice a year. The ESHG President, Vice-President and President-Elect are ex-officio members. Since 2012, the PPPC has a liaison member to the SPC (in 2015-2016 Francesca Forzano).
ESHG members interested in becoming a PPPC member are requested to send their CV and a letter of interest stating their expertise and motivation for joining to the Chair, Martina Cornel mc.cornel(at)vumc.nl. 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 PPPC via the same email address.
Recommendations on the following topics are available in the European Journal of Human Genetics
- Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Summary and Recommendations - More
- Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Background document - More
- Whole-genome sequencing in newborn screening? A statement on the continued importance of targeted approaches in newborn screening programmes - More
- Whole genome sequencing in health care - recommendations of the ESHG - More
- Whole genome sequencing in health care - background document "the thousand dollar genome" - More
- Genetic testing and common disorders in a public health framework. - More
- Genetic testing and common disorders in a public health framework: how to assess relevance and possibilities. Background document - More
- Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics.
European Journal of Human Genetics advance online publication 11 March 2009; doi: 10.1038/ejhg.2009.26 - More
- Borry P, Evers-Kiebooms G, Cornel MC, Clarke A, Dierickx K. Genetic testing in asymptomatic minors.
European Journal of Human Genetics advance online publication, 11 March 2009; doi:10.1038/ejhg.2009.25. - More
- Provision of genetic services in Europe: current practices and issues - More
- Population genetic screening programmes: technical, social and ethical issues - More
- Data storage and DNA banking for biomedical research: technical, social and ethical issues - More
- Genetic information and testing in insurance and employment: technical, social and ethical issues - More
- The need for interaction between assisted reproduction technology and genetics (Recommendations) - More
- The interface between assisted reproductive technologies and genetics: technical, social, ethical and legal issues (Background Document) - More
- Background Document on "Patenting and Licensing in Genetic Testing - Ethical, Legal and Social Issues" - More
Draft Background Documents
- Polymorphic sequence variants in medicine: Technical, social, legal and ethical issues Pharmacogenetics as an example (Draft Background Document) - More
- PPPC-EHSG response to the Human Genetics Commission consulation on A Common Framework of Principles for direct-to-consumer genetic testing services - More
- ESHG response to the European Parliament Report on the ethical, legal, economic and social implications of human genetics - More
- Letter of the ESHG PPPC to members of the European Parliament concerning "A European action in the field of rare diseases" (vote on 23 April 2009) - More
- ESHG reponse to the EU consultation on "Rare diseases: Europe's challenge" - More
The papers produced by the PPPC were submitted for comments, then endorsement, to the members of the International Federation of Human Genetics Societies.
Some of the documents are available as pdf file (for which you will require a copy of Acrobat Reader, available free)
- Article: Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market - More
Pascal Borry & Martina C. Cornel & Heidi C. Howard