Genetic Alliance UK - Views & Policy:

Life with a Genetic Condition

Genetic Alliance UK’s work is not just about research and treatments. Patients and families affected by genetic conditions face many issues outside healthcare provision.

Information for Patients

Genetic Alliance UK has produced many information leaflets to help patients and families understand the cause of the condition that affects them, and explain their options both in the health service and in getting on with life.

Our leaflets are found here: A-Z of Patient Leaflets.

Insurance

Obtaining insurance is one of the main impacts a genetic condition can have upon a patient or families’ life apart from direct healthcare related issues.

The Asking Relevant Questions project is a two year research initiative funded by Bupa. The project aims to help patients negotiate the difficult process of obtaining life and holiday insurance when their family is affected by an inherited condition.

Read more about the: Asking Relevant Questions Project.

Over-The-Counter Genetic Testing

In recent years, there has been an increase in the number of genetic tests that are available to buy over the counter or on the internet.

Some of the tests offer a diagnosis of single gene inherited disorders. Genetic Alliance UK advises anyone who is at risk of a single gene disorder to obtain a diagnostic test on the NHS by asking their GP for a referral to a Regional Genetics Service. In this context the diagnosis will be delivered by trained professionals who can fully explain the implications for both the patient and their family. Genetic Alliance UK has written a Over-the-counter Genetic Susceptibility Tests leaflet (pdf) explaining this.

You can also read our response to the Nuffield Council of Bioethics consultation on this issue in the 2009 Policy Archive.