On this page you will find reports from various workshops and consultations that Genetic Alliance UK have carried out over the years.

December 2012

Final project report from the Ethnicity and Access project:

Lay Summary

Full Report


April 2012

Final project report from the Citizens' Jury project, Risks and Benefits:

Executive Summary

Full report


November 2011

Final project report from the Facilitating Networks project: Facilitating Networks report

Final project report from the Patient Information Prescriptions project: patient information prescriptions report

Final project report from the Patient Information Pathways project: patient information pathways report


April 2011

Patient Partner final project report. This project looked at improving patient involvement in clinical research

Patient involvement in clinical research: A guide for Patient Organisation and Patient Representatives

and A guide for Sponsors and Investigators


Older Reports

SWAN UK Research
Summer 2010

A guide to Registry Design

July 2010. Dr. Anil Mehta, at the University of Dundee has kindly written this short guide to give hints and tips to setting up a registry.

Scottish Stakeholder Meeting
April 2006

Access to samples and tissues for research and clinical practice
January 2006

Risk Communication Workshop Report
Looking at some of the issues surround Biosimilar medicines
July 2005

Translation Workshop Report
Held on 1st December 2003

Research Approval and Rare Genetic Disorders
Minutes from meeting held June 2003

What is the Nature of Evidence
Report of Workshop held June 2003

What can we deduce from a family history?
Current issues in Genetics and Insurance Practice.  Workshop held on 17th January 2003

The Uses of Genetic and other Predictive Medical Information in Insurance
The Handling of Rare Events. An invitation workshop convened by the Genetic Interest Group.
26th June 2002

Where is Research Going? What are we doing about it?
26th - 27th May 2002, Strasbourg, France.

Workshop on ethnicity profiling in clinical genetics
Clinical education centre, Glenfield hospital - Leicester
25th April 2002

Research and Rare Genetic Disorders
Report of a workshop
19th April 2002

Advanced Workshop on Embryo Research
(September 2001)
The report of an advanced workshop held at the Club de la Fondation Universitaire, Bruxelles, Belgium, 14-16 September.

New Paradigm: New Policies, Healthcare and the New Genetics in Britain and Germany
Report of a seminar organised by the Genetic Interest Group under the auspices of the European Federation of Biotechnology Task Group on the Public Perceptions of Biotechnology
September 1999