Rececived documents

The following documents were not officially endorsed by the ESHG, but are put on the ESHG website as a service to the human genetics community. Comments are welcome

Nuffield Council on Bioethics: Exploring ethical issues in biology and medicine

March 16, 2017

This report explores ethical issues arising from current and possible future uses of non-invasive prenatal testing (NIPT).

GENTEE project – Final Report

February 3, 2014

The European Commission’s Joint Research Centre (JRC) published the final report of the GENTEE project, entitled “Genetic Testing in Emerging Economies”,

Shorter versions of single country reports 

 

Direct-to-Consumer genetic testing for health-related purposes in the European Union

November 25, 2012

The lay summary of the latest report of the European Academies Science Advisory Council (EASAC) and the Federation of European Academies of Medicine (FEAM) entitled “Direct-to-Consumer genetic testing for health-related purposes in the European Union” has been released.

 

‘Array in daily practice: promises and pitfalls’ Symposium

Following the workshops and talks on ‘Array in daily practice: promises and pitfalls’ held at the ESHG Symposium in 2011, six papers were produced. 

Official responses to the Public consultation on the revision of Directive 98/79/ec of the European Parliament and of the Council of 27 October 1998 on in vitro diagnostic medical devices

September 14, 2010

 

How seriously should we take risk predictions for Multifactorial Illnesses?

June 12, 2010

Proposed for discussion by F. Clerget-Darpoux and A. Cambon-Thomsen.

Questions and Answers document on Gene therapy

January 21, 2010

The European Medicines Agency has published a Questions and Answers document on Gene therapy (EMA/CHMP/GTWP/212377/2008).

UK House of Lords Science and Technology Committee report

The UK House of Lords Science and Technology Committee reports that genomic medicine is already in practice but needs a coordinated set of infrastructural and training systems to allow the healthcare system to cope.

 

OECD Guidelines for Quality Assurance in Molecular Genetic Testing

November 24, 2009

Access the document

In vitro Diagnostics (IVD) Directive of the EU Commission

November 24, 2009

Professor David Melzer from the University of Exeter and Stuart Hogarth from the University of Loughborough, have drafted a briefing, with the support of EuroGentest, which outlines a series of issues in the In Vitro Diagnostics (IVD)  Directive of the EU commission which need to be addressed

 

Clinical Indications for Genetic Testing

November 24, 2009

Unit 3 of EUROGENTEST has developed “points to consider” regarding clinical indications for genetic testing (Javaher et al. , Comm Genetics 2008; 11:75-120 – see page 118). (Update)

Guidelines for Human Biobanks and Genetic Research Database – OECD Consultation

November 24, 2009

OECD has launched public consultation on the draft Guidelines for Human Biobanks and Genetic Research Databases Deadline for comments: May 16, 2008.

 

Guidelines for Clinical Protocols in Genetic Research Recommendations for the Creation and Assessment of Clinical Research Protocols in Genetics

November 24, 2009

Public Consultation regarding a European Action in the Field of Rare Diseases

November 24, 2009

 

International Principles for direct-to-consumer genetic tests – produced by the Human Genetics Commission

August 4, 2010

The Human Genetics Commission, the UK Government’s advisory body on developments in genetics and their ethical, legal, social and economic implications, has launched today a ‘Common Framework of Principles’ for direct-to-consumer genetic testing services. The Principles can also be downloaded from the HGC website at http://www.hgc.gov.uk/Client/document.asp?DocId=280&CAtegoryId=10.