The charity Jnetics was established in order to raise awareness of Jewish genetic disorders and to help anyone affected or at risk to access the best information, services and support possible. Jnetics is a charity not connected to Reform Judaism. However, we wanted to let you know about the important work that they do.
Why is it so important that I get screened for Jewish genetic disorders (JGDs)?
It is common for Jewish people to be ‘healthy carriers’ for certain recessive genetic disorders. Though unaffected themselves, ‘carriers’ are at an increased risk of having children born with these severely debilitating, life-shortening disorders. It is now possible to completely prevent these devastating disorders, as long as one is aware that they are a ‘carrier’.
Carrier screening identifies if you are a ‘carrier’ and are at risk of passing on a severe, recessive JGD. This information enables you and your partner to explore the various options available to ensure that your children do not inherit any of these disorders.
If you have not already had screening, you are strongly advised to get screened before starting a family to help protect the health of your future children.
How likely is it that I am a carrier for one of these Jewish genetic disorders?
At least 1 in 3 Jews are ‘healthy’ carriers of at least one severe, recessive JGD. Screening for these disorders is highly advised for people of Jewish origin – even if only 1 of your 4 grandparents is Jewish, regardless of if they are Sephardi, Ashkenazi or Mizrahi.
The disorders covered on Jnetics test are all severe, debilitating and incurable. Most are severely life shortening and have no good management options. Fortunately, are all preventable via carrier screening. To see a full list of the disorders that Jnetics test for click here
What are the options if both my partner and I are carriers for the same condition?
There are several options available for ‘carrier couples’, couples who are carriers for the same condition.
An increasingly popular option is Pre-implantation Genetic Diagnosis (PGD). This is a process that involves IVF to create embryos that can be screened to check if they will develop into an affected child. Only embryos that will not result in being an affected child are chosen to be implanted back in the mothers’ womb.
For information about all the options available, please visit www.jnetics.org or email screening@jnetics.org.
Should I get screened for any other disorders?
If someone in your family is a carrier of, or affected by, a severe genetic condition that is different from the 47 disorders that Jnetics test for, then it may be advisable to get screened for that disorder. Where a clear family history is identified, the NHS may provide disorder specific screening. Ask your GP to refer you to your local clinical genetics centre to explore if you can access to screening for a disorder known in your family.
The test offered at the Jnetics clinic does not include testing of the BRCA1 and BRCA2 genes. Mutations in these genes are disproportionately more common in people of Jewish ancestry and significantly increase an individual’s risk for certain cancer types. NHS England have recently launched a programme of free BRCA gene testing dedicated to the Jewish community. To read more about what BRCA gene testing is, what to think about before testing, how to get tested and how to get support if considering testing, click here
How can I get tested with Jnetics?
Jnetics is the only cross-communal provider for carrier screening for Jewish genetic disorders. They run a virtual home-based clinic, in partnership with the NHS. The clinic is designed for both partners of a couple to screen together, however individuals can test when relevant.
Testing is done via a Buccal swab and results are returned to you within 10-12 weeks.
The total cost for screening for 47 severe, recessive JGDs, including counselling services, is £385 for a couple or £275 for individuals (subsidised by Jnetics from the real cost of £400 per person). For more information and to book, click: www.jnetics.org/screening or call 0208 158 5123.