Marriage between close relatives such as first cousins is rare in some communities, while being commonplace in others.
What are the real risks faced by cousins who marry of having a child which is affected by a serious, possibly life-threatening, genetic condition? What help is available to cousins who are married and want to have children safely?
On 11 March 2019 the CMF brought together expert speakers to discuss this vital issue. They discussed the issues affecting Britain’s Muslim communities and also shared the experiences of Britain’s Jewish communities.
The host for the evening was Lord Sheikh and he opened the proceedings before handing over to CMF Executive member Suzy Webb who acted as MC for the evening.
In accordance with CMF practice, we began with a Quran recitation in Arabic followed by the English translation. Imam Shakeel Kunwar recited Quran verse 2:62.
We then had three speakers tell us about the Breaking Down Barriers project.
Kerry Leeson-Beevers, National Development Manager, Breaking Down Barriers introduced their work, before handing over to Asya Choudry, Community Engagement Manager, Breaking Down Barriers. Finally Jane Young, Director, Sylvia Adams Charitable Trust talked briefly about why they have funded the project.
They have made their slides available at this link.
The audience then heard from Katrina Sarig, Executive Director, Jnetics. She has also made her slides available at this link.
CMF Chairman Mohammed Amin spoke briefly to summarise his understanding of the science and the issues. He recorded his presentation, and it can be watched below.
There was then a long question and answer session to allow full audience participation, before CMF Secretary Faruk Miah MBE concluded the evening with a vote of thanks.
About Breaking Down Barriers
Research on genetic service delivery and patient/family experience shows that patients and families affected by genetic disorders continue to experience barriers to accessing services. It is well documented that this is particularly so for those from minority ethnic groups and those with close cousin marriage.
At Breaking Down Barriers, we believe that patient organisations, support groups and community organisations have an important role to play in addressing the challenge of developing appropriate genetic services for the UK’s multi-ethnic population. The purpose of this project is to strengthen the ability of organisations to develop supportive and inclusive services for individuals and families affected by genetic disorders and to ensure that people have access to appropriate and accessible information to enable them to make informed choices in terms of family planning.
Thus Breaking Down Barrier was developed as a way to engage multi-ethnic populations affected by genetic conditions, through offering small grants to charities, patient organisations, support groups and community organisations nationally. Bridging the gap of essential support the NHS cannot offer.
Jnetics is the only organisation dedicated to improving the prevention and management of Jewish genetic disorders (JGDs) in the UK. The charity raises awareness about JGDs, signposts to the best available information and support, and facilitates access to responsible screening.
JGDs refer to genetic disorders that, though not exclusively Jewish, have an increased prevalence in people of Jewish ancestry relative to the general population. These vary in severity but include many severely disabling, life-shortening recessive conditions as well as the life-threatening dominant BRCA-associated cancers.
In 2016, Jnetics established ‘GENEius’ – a targeted education and screening initiative for young Jewish adults endorsed by all UK synagogue and community leadership organisations. Working with the NHS, Jnetics provides JGD education and screening for severe, recessive JGDs through their GENEius school (Year 12), university and pre-marriage programmes.
Jnetics, via their GENEius activities, aims to change UK Jewish community culture so that JGD education and screening become standard practice – as they are in communities outside the UK with significant life-saving impact.
In the picture below, from left to right, starting with those seated, are:
- Suzy Webb
- Jane Young
- Asya Choudry
- Faruk Miah
- Imam Shakeel Kunwar
- Lord Sheikh
- Kerry Leeson-Beevers
- Mohammed Amin
- Katrina Sarig