A three-year genetics project has been launched in Birmingham to help tackle the city's high infant mortality rate by raising awareness of inherited genetic disorders. The project has three strands: educational, clinical and primary care.
The primary care strand of the project, which was launched this week, aims to raise the profile of inherited genetic disorders through the public's engagement with GPs. Three GP practices in the Heart of Birmingham Teaching Primary Care Trust are offering a screening programme for inherited blood disorders, such as sickle cell anaemia and thalassemia. They are raising awareness of other genetic disorders and are identifying families appropriate for specialist referral. The clinical strand of the project includes developing 30 new molecular tests for genetic diseases over the next three years. 'We wanted to launch in primary care to raise the profile of this area among GPs and Primary Care', said project manager Yasar Eltaf, from the Birmingham Women's hospital.
The project's focus is on genetic risk generally, but first-cousin marriage is a risk factor for inherited genetic disorders. Birmingham's infant death rates were linked to first-cousin marriage by a Channel 4 Dispatches programme aired in August this year. A community educator from the Enhanced Genetic Services Project, Zahira Maqsood, emphasised: 'This project is not about chastising families and community groups for their marriage and cultural choices. It is about enabling people to be aware of potential health risks and choices available to them'.
Infant death rates in Birmingham are 8.2 per 1000 population, almost double the national average of 4.8 per 1000 population. About 139 infants die each year in the city.
Sources and References
Related Articles
The challenge of genetics and consanguinity for General Practice
A Dispatches programme on rare genetic conditions and cousin marriage aired a few weeks ago ignited much debate. Many people commenting on the programme were correct to say consanguinity alone isn't the issue. However, the high rate of autosomal recessive disorders in some communities remains an important issue, regardless of its intricate and complex causes. This needs to be addressed, preferably with input from general practitioners...
When Cousins Marry (Dispatches): The producer's perspective
'When Cousins Marry' (Dispatches) was a difficult film to make. It was painful at times but immensely rewarding in the end. The film was commissioned because it highlighted a potentially avoidable cause of serious disabilities in hundreds of British children each year...
TV Review: Dispatches - When Cousins Marry
Why am I criticising a campaign to reduce the incidence of severe autosomal recessive diseases? After all, I spent five years of my 40-year clinical career in medical genetics living in Oman - a Muslim country where over 50 per cent of marriages are consanguineous? Let's dig deeper!...
MPs listen to the concerns of patients and families with rare genetic conditions: Findings from the Family Route Maps project
A reception at the House of Commons on 26 February, sponsored by Dr Evan Harris, MP, on behalf of the Genetic Interest Group (GIG), attracted 200 people, including 15 MPs and 6 Lords. Highlighting difficulties faced by individuals and families with rare genetic conditions in the run up to the...
Most US babies now get newborn screening tests
Most babies born in the US are now screened for 29 medical conditions, including sickle cell anaemia, cystic fibrosis and hearing loss, according to a new report by the March of Dimes. Two years ago, the charity revealed that only 38 per cent of infants underwent...
Two thirds of US babies get newborn screening tests
Nearly two-thirds of all babies born in the US this year will be screened for more than 20 life-threatening conditions, according to a new report by the March of Dimes. It follows last year's call from the charity for all states to carry out a battery...
Newborn screening varies across US
Most newborn babies in the US are not covered by the full panel of tests recommended by genetic screening experts, according to a report by the March of Dimes charity. Every state requires that infants are tested for a range of conditions, including genetic disorders and hearing problems. However, according...
Leave a Reply
You must be logged in to post a comment.