01709 210151 / 07716 135940 kerry.leeson@alstrom.org.uk

Jnetics

Address: Unit 207, Balfour House, 741 High Road, North Finchley, London, N12 0BP
Telephone Number: 020 8158 5123
Email: info@jnetics.org
Website: www.jnetics.org
Registered Charity Number: 1134935

Prevalence of Jewish Genetic Disorders: Though cases of the most severe recessive conditions that we cover are rare – 1 in 5 Ashkenazi Jews are carriers of at least one of these severe genetic disorders.

The less severe recessive disorders that we cover are more common with carrier frequencies ranging from 1 in 3 to 1 in 15

1 in 40 Ashkenazi Jews are carriers of a BRCA mutation which significant increases their risk for developing breast, ovarian or prostate cancer.

What are Jewish Genetic Disorders?

Jnetics focuses on Jewish genetic disorders (JGDs) – genetic conditions that have scientifically established higher prevalence among people of Ashkenazi Jewish ancestry relative to the general population. 

These vary in severity, but include conditions that are fatal in childhood and others that lead to chronic disability and shortened lifespan. 

1 in 5 people with Ashkenazi Jewish ancestry is a carrier of a severe recessive Jewish genetic disorder- putting them at increased risk of having an affected child. 

1 in 40 Ashkenazi Jews are carriers of a BRCA mutation which significant increases their risk for developing breast, ovarian or prostate cancer. 

The list and details of the conditions that we are interested in can be seen at: Ashkenazi Jewish genetic disorders 

What support is available?

Jnetics is a national charity with strong links to international organisations.

Jnetics is the only organisation in the UK that focuses on improving the prevention and management of Jewish genetic disorders (JGDs).

Jnetics is dedicated to improving the understanding, diagnosis and management of Jewish genetic disorders (JGD’s) in the UK Jewish community, and so far as possible to eliminating their occurrence.

We were established to raise awareness and to help anyone affected and at risk to access the best information, services and support available relating to JGDs.  In addition to our core awareness-raising, information provision and signposting work, much of our work in recent years has focused on improving access to responsible genetic testing.

Jnetics established the first community carrier screening service covering 9 of the most severe recessive JGDs. This helps members of our community to identify if they have a high risk of passing on a severe recessive disorder to their children and explore the various options available for managing this risk.

We have an established working relationship with the NHS – delivering our screening services in partnership with Northwick Park Hospital’s clinical genetics department and Liverpool Women’s Hospital laboratory.

In order to achieve their goals, we focus on three core areas: raising awareness/education, providing information, and offering carrier screening for severe recessive Jewish genetic disorders (JGD). 

Raising awareness 

  • Much of our awareness-raising work takes place via our GENEius programme. GENEius provides education to all Year 12 students at Jewish secondary schools, to Jewish university students, and to engaged couples by working with various synagogue movements so that JGD information is provided as part of the pre-marriage process. 
  • In addition, our activities include PR campaigns in the Jewish press and via social media channels; presentations and group discussions at synagogues and schools; and targeted events with rabbis, community leaders and medical professionals to broaden community understanding, and management, of JGDs. 

Providing information 

  • Through our website and other resources we help enable people to find the best information, services and support in the UK for those affected by Jewish genetic disorders.  All are information is provided impartially and without judgement, helping people to manage their situations in the way that best fits their personal beliefs and circumstances. 
  • With funding from Jeans for Genes we have developed a ‘signposting’ service that includes a facility to send individual questions directly, and in confidence, to our genetics information specialist. 

Carrier screening for 9 severe recessive Jewish genetic disorders 

  • Jnetics works in conjunction with the NHS to provide the UK Jewish community with accessible, responsible and affordable carrier screening for the 9 most severe recessive Jewish genetic disorders* 
  • The genetic testing is done in an NHS laboratory based at Liverpool Women’s Hospital, while the clinical genetics department in Northwick Park Hospital provides the NHS genetic counsellors involved in several aspects of the service. 
  • Screening is provided via the Jnetics clinic based at Barnet Hospital, as well as distinct screening events delivered as part of the GENEius programme.  

 

Breaking Down Barriers Project Overview

“Jnetics is dedicated to improving the understanding, diagnosis and management of Jewish genetic disorders (JGD’s) in the UK Jewish community, and so far as possible to eliminating their occurrence.” 

Funding from Breaking down Barriers will contribute towards a much larger project covering four specific areas:

  • Education of Young People – produce an education programme aimed at sixth form and University students and to young adults contemplating marriage to promote responsible management of JGD’s amongst young people.
  • Screening provision and facilitation – develop a carrier screening programme for recessive JGD’s to support the education programme. Similar work is already taking place within their successful Jnetics carrier screening programme.
  • Advocacy within the Jewish and wider community – build a collaboration of community leaders to support and promote education and screening.
  • Signposting/Information Provision – develop and maintain their website and resources

Year 2 Project
The Breaking Down Barriers Advisory Group met in November 2017 to review the grant monitoring forms for year 1 projects and to consider the action plans submitted for year 2. Following successful completion of year 1, they were pleased to approve the plan submitted by Jnetics to carry out the following work:

  • Continue with their project and now focus on delivering information on risk management and offering carrier screening to year 12 students in 7-8 Jewish secondary schools
  • Provide information about Jewish genetic disorders as an integral part of the marriage registration process
  • Continue to support Northwick Park Hospital and Barnet Hospital Genetics Departments to deliver community screening.

Year 3 Project 

  • Continue to provide Jewish genetic disorder (JGD) education and screening to 7-8 Jewish secondary schools a year, as well as 2-3 university campuses a year. 
  • Continue to work with synagogue movements to make information provision about JGD screening an integral part of the marriage registration process, and work with young professional organisations to raise awareness of JGD screening in their target audience. 
  • Continue to work with North West Thames Regional Genetics Service to deliver a Jnetics screening clinic from Barnet Hospital and raise awareness of JGD screening amongst GPs and other relevant healthcare professionals. 
  • Work with our Science and Medical Advisors and partner laboratory to expand our screening panel to include a greater number of JGDs, relevant to those of both Ashkenazi and Sephardi Jewish ancestry.