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.