THE Islamabad administration is considering making pre-marital testing for thalassaemia mandatory in an attempt to reduce the incidence of the disease. Quoting officials in the capital administration, a report in this paper on Tuesday says that couples found carrying the disease will be barred from marrying as the local authorities will not register their union. A similar law has already been passed by the Khyber Pakhtunkhwa Assembly. According to the best estimates, around 6,000 children are born suffering from thalassaemia in Pakistan every year. An inherited blood disorder which leaves the patient anaemic and vulnerable to other health complications, the treatment of thalassaemia is costly and involves regular blood transfusions and bone marrow transplants. However, as many experts suggest, better public awareness is perhaps the best method for thalassaemia prevention.

Though officials claim that mandatory testing will not stigmatise those found to be carrying the disease, given Pakistan’s social milieu such a measure may well leave people who test positive vulnerable to social exclusion. Screening is important, but it should be a personal choice, not a government order. Instead of calling for mandatory tests, therefore, the state should step up mass awareness campaigns that inform the public about the causes and prevention of thalassaemia. For example, a number of medical experts have pointed out that avoiding marriage between cousins — a practice very common in Pakistan — may reduce chances of having children born with the disorder. It would be better for the state to advise people rather than telling them who they can and cannot marry. Let people know the consequences of marrying a certain person if found to be carrying thalassaemia and let them decide. Mandatory testing may well end up infringing on people’s fundamental rights. As for those patients already suffering from the ailment, better and more affordable treatment facilities are required, especially in the public sector.