The History of the Genetic Interest Group

GIG was founded in 1989, however the origins our umbrella organisation began a few years prior to this. Please read on to find out more

If you would like to read our NEW comprehensive History of GIG click on our HISTORY link.  An easy to use contents list at the front of this publication lets you skip to the sections you are interested in and there are also internet links within the text to relevant organisations.

Why was there a need for such an organisation?

Due to the large number of policy issues that were arising in the genetic field in the late 1980's, it became apparent that one voice was needed for all the people affected by these conditions.

Many support groups had been set up by volunteers in this period, and the network was fragmented allowing little space or time for interaction and the sharing of ideas and problems amongst fellow organisations. With one voice and point of contact, the individual organisations would be able to enhance their ability in communicating with each other, and with outside parties, for example government bodies, health organisations, and pharmaceutical companies, about the issues that they were facing.

Having an umbrella organisation would also enable the larger organisations to share their knowledge, and to be in contact with smaller support groups. It would enable a sharing of information, support, and help in bringing issues into the public foreground and raise public awareness. By working together and sharing knowledge amongst the groups there were more possibilities in improving the research and development, treatment and general care of sufferers.

Who decided to set up GIG?

The initiative to begin this organisation was taken by Shirley Dalby, who at the time was working for Huntington's Disease Association.

How many charities were involved at the beginning?

Between 12 - 15 charities were contacted and attended a workshop to discuss the possibilities of setting up an umbrella organisation to be called the Genetic Interest Group. The proposal was also shown to the British Clinical Genetics Society in Oxford. They were very keen on such a group being formed and decided to back the founding of the Genetic Interest Group. GIG was born.

The early days.

For the first four years the Genetic Interest Group was run on a voluntary basis by Ann Hunt of the Tuberous Sclerosis Association who volunteered her time, and space, to work from home alone initially and later with the help of a part time secretary who was "loaned" to GIG through Christine Lavery who worked for Contact a Family at the time and is now Director of the Mucopolysaccharide Diseases.

The Cystic Fibrosis Trust also kindly volunteered to print "GIG Today" the newsletter, and a friend designed the logo, which is still used today.

TODAY

After four years GIG gained a part time secretary  which was shortly followed by a grant which was gained in order to employ a Director of GIG.  Alastair Kent, remains the Director of the Genetic Interest Group today, and is now accompanied by five full time staff and one part time staff member in GIG's head office in London as well as two regional staff based in Wales and Scotland.  GIG has also recently received funding to have a Regional Officer based in Scotland.  

GIG now represents over 130 voluntarily organisations and has representation on numerous bodies in the UK, Europe and the rest of the World.