Publications Archive


Human Rights, Privacy and Medical Research -  Analyising UK Policy on tissue and data. (2006)
This report traces the impact that the right to privacy is having on the regulation of medical research and clinical practice with a particular focus on the implications for human genetics.

Research and Rare Genetic Differences (2006)
A joint publication with the Oxford Genetics Knowledge Park which highlights and answers some of the common questions asked by research ethic committees (RECs) when looking at research proposals relating to genetic disorders.


A Genetic Condition in the Family..? (2004)

Personal accounts of those who are directly affected by genetic conditions.
Eight individual leaflets looking at specific genetic conditions and the benefits of gaining a diagnosis to the patient and family.


Cystic Fibrosis

Duchenne/Becker Muscular Dystrophies


Hereditary Non-polyposis colorectal cancer

Huntington  Disease Cover  Huntington Disease Inside leaflet

Hypertrophic Cardiomyopathy Cover / Hypertrophic Cardiomyopathy Inside Leaflet

Tuberous Sclerosis

Hereditary Breast and Ovarian Cancer


DNA  Delivers: 50 Years of progress told through the eyes of patients and their doctors (2003)
This publication celebrated the 50th anniversary of the discovery of DNA in 2003.

Foreseeing the Future.  Genes and Risk? (2003)

A guide to organisations critical of Human Genetics and Embryology (May 2003)


Clinical Governance: Meeting the needs of patients and their families (January 2000)
A patient centred checklist for clinical genetics


Genetic Testing, Screening and "Eugenics" (Novermber 1999) 

Has your child got a genetic disorder?  (July 1999)
This simple leaflet helps parents to know what questions they might like answered when suddenly given a diagnosis of a genetic disorder in their child. It was produced by a consortium of Genetic Alliance UK, the Anorchidism Support Group, Androgen Insensitivity Support Group, Turner Syndrome Support Society and the Adrenal Hyperplasia Network.


Guidelines for Genetic Services  (October 1998)
A document designed to help genetic and other service providers and commissioners, in partnership with service users, set and monitor standards, identify areas for improvement, devise strategies to develop and improve the service, and plan for the future.

Confidentiality Guidelines (October 1998)
A report considering the important questions raised by the familial character of genetic information.