Setting up a community genetic service for families in Walsall at higher genetic risk of infant mortality and morbidity

Health inequalities exist between ethnic groups, an important example of this being infant mortality with babies of mothers born in Pakistan having double and babies of mothers born in the Caribbean having 63% higher rates than the national average. West Midlands Ethnic Minority Liaison Committee (WELCOME) and partners organised a conference to arrive at consensus among experts and stakeholders and to make recommendations around reducing infant mortality. One key area discussed, which is often contentious, was cousin marriage: its potential impact on infant and perinatal mortality and what health service response to this should be. Recommendations included: the setting up of a community genetic service in areas with higher risk of recessive disorders as a consequence of cousin marriage; genetic education to the wider public and health professionals; and community engagement, including community and religious leaders. This paper outlines how these recommendations were arrived at, the potential barriers identified in addressing this issue and the process by which service change was achieved with an aim to improve the outcome of infant and perinatal health among groups with higher burdens of genetic disorders in Walsall.