Centre to trace lineage of Traveller families

The Pavee Point Travellers' Centre is planning to trace the lineage of every Traveller family in the State to identify if cousins who marry each other are at a higher risk for certain diseases or disorders.

Consanguinity, or the marriage of first or second cousins, is quite common among Travellers because they traditionally marry within their own 22,435-strong community. Between 19 and 40 per cent of Traveller marriages are between first cousins.

The high level of childhood illness and death among Travellers has often been blamed on consanguinity, but a 2003 study by the Traveller Consanguinity Working Group described this as "a myth" and said intermarriage did not necessarily cause genetic disorders. However, where a genetic disease was already present, the risk to children of that union was higher, it found.

Some inherited disorders are more common among Travellers, including galactosaemia, a condition where the body cannot process galactose in milk. One in 11 Travellers carries this gene, compared with one in 107 in the general population.

Sudden Infant Death Syndrome (SIDS) is also higher in the Traveller population. The most recent figures estimate it is 3.7 times higher. This is actually an improvement on the situation in 1993 when the incidence of SIDS was 12 times higher among Travellers.

The working group recommended that counselling should be offered to Travellers who plan to marry their cousins. It said that Traveller couples who are cousins should be informed of the "general potential risk" and be offered a range of supports.

Nurul Amin, Pavee Point's training and research officer, said it decided to conduct the mapping exercise because it was often difficult to establish the exact links between families.

Once the relationships between families were traced and particular diseases identified, Pavee Point would then look at providing targeted education and genetic counselling. "We need far more information before we can do this," Mr Amin said.

Research conducted by UCD for the All-Ireland Traveller Health Study would also provide more information on these issues, he added.

Earlier this month, Minister for Health, Mary Harney, launched the study, due for completion in 2010. It will involve peer research by Travellers, a full census of the Traveller community and interviews with 2,000 families about their experience of services in the past year. It will also look at the experience of birth and the first year of life of children.

Mr Amin said that there was a serious lack of information about the health of Travellers. "The last study was in 1986, published in 1987, so we know very little about Traveller health," he said.

Travellers have the same life expectancy as the general population had in the 1940s. Traveller child mortality is three times the norm. Male Travellers live 10 years less than men in the general population, while Traveller women live 12 years less.