Jnetics has produced the first-ever review of awareness, education and services of Jewish genetic disorders in the UK. The report summarises findings from a year-long consultative dialogue with key stakeholders in the Jewish, patient group and medical communities.
The key findings of the research are:
Awareness of Jewish genetic disorders is very low among Jewish community organisations and health professional groups, with the exception of Tay-Sachs disease and BRCA 1 and 2 associated cancers.
There is no comprehensive or systematic programme of awareness-raising or information provision for the UK Jewish community unlike in the USA, Israel, Canada and Australia.
Tay-Sachs disease is the only Jewish genetic disorder for which NHS carrier screening is available for the Jewish community. Options for genetic carrier testing for the other disorders are currently very limited.
Obtaining a clear diagnosis for many of the Jewish genetic disorders is often a difficult and lengthy process, and little specialist expertise or support exists for the rarest conditions.
As a result of this research, Jnetics has identified important measures to be put in place in the UK without delay, including:
A targeted programme of awareness-raising and education.
A screening programme expanded beyond Tay-Sachs to include a broader panel of Jewish recessive genetic disorders.
An effective signposting and information system to guide those seeking expert advice and resources.
We have been greatly encouraged by the interest in this project from all the organisations we have contacted. Building on this, we now have a real opportunity to work together to make a significant difference to the Jewish community as a whole, through raising awareness and improving the management of these potentially devastating genetic conditions.
In response to the dialogue with Jnetics, work is already underway to the implement these recommendations.
The link below leads to an on-line version of the review. If you would like more information, or to explore how you can get involved with the activities of Jnetics, please contact: firstname.lastname@example.org
Jewish Genetic Disorders Review – Dec 2011 (PDF 860kb)
Jnetics would like to thank The Andor Charitable Trust for its generous contribution to this research project and to all the research participants for sharing their time and experience.