ISLAMABAD: The National Assembly on Tuesday passed a bill to make premarital thalassaemia screening mandatory for grooms and brides — a move that could significantly reduce the prevalence and impact of the life-threatening genetic disorder in the country.

Piloted by Sharmila Sahiba Faruqui, the Islamabad Capital Territory Compulsory Thalassaemia Screening Act, 2025, binds the healthcare centres treating thalassaemia patients to ensure that all blood relatives of the children are screened for the disease.

“The blood relatives of thalassaemia patients who are marrying shall be advised and counselled to obtain a premarital blood screening to ensure that they are not carrying the trait,” it reads.

When the bill turns into a law, antenatal tests will be carried out on pregnant women, who are known carriers and whose spouses are also carrier for the trait, subject to approval having been obtained from the couples.

All centres dealing with thalassaemia shall ensure that 10pc of their budget is spent on developing facilities for prenatal diagnosis of thalassaemia

“All nongovernmental organisation centres dealing with thalassaemia shall ensure that ten percent of their budget shall be spent on developing facilities for thalassaemia and prenatal diagnosis of thalassaemia,” it says.

The healthcare facility shall provide counselling facilities for relatives of patients on the risk of consanguineous marriages and on their chances of having thalassaemia children.

The results are to be reported to those who are tested and if they are carriers (thalassaemia) they are to be given counselling regarding their marrying someone with the same trait and the risk of passing on the disease to their offspring.

The test results are also required to be entered into a databank for the registration of carriers of the trait.

Under the bill, every marriage in the Islamabad Capital Territory before solemnizing shall fulfil the various preventive health measures.

The Nikkah registrar shall obtain test reports of premarital screening of bride and the bridegroom.

The Nikkah registrar shall keep and maintain these reports for at least two years from the date marriage is solemnized; and if marriage is solemnised in contravention of law, the licence of such registrar shall be cancelled or whoever, other than the Nikkah registrar, solemnized such a marriage shall be fined Rs100,000.

In case a healthcare facility fails to carry out the necessary screening, it facility shall be held negligent to perform its duty and shall be charged a penalty of Rs100,000.

It shall be compulsory for the healthcare facility to provide detailed genetic counselling with information on the pattern of disease and trait transmission. If the healthcare facility does not provide written and oral counseling, it shall be deemed to have been negligent of their duty and shall be penalised.

“Notwithstanding anything contained in the Code of Criminal Procedure 1898, an offence punishable under this Act shall be bailable and triable under the provisions of this Act by a Judicial Magistrate,” the bill reads.

It says no court shall take cognizance of an offence under this Act, except upon a complaint in writing by the federal secretary health services or the district health officer ICT or any other officer on his behalf authorised by him.

“The aim of this Bill is to significantly reduce the prevalence and impact of thalassaemia in Pakistan, where the disease affects 3-8% of the population and leads to the birth of approximately 5,000 transfusion-dependent thalassaemia major children each year. This Bill seeks to implement a comprehensive approach that includes mandatory genetic screening and counseling for families with a history of thalassaemia, particularly those engaged in consanguineous marriages, which increase the risk of passing on the disease,” the statement of objects and reasons of the bill reads.

It adds that the proposed legislation will ensure the identification of carriers (individuals with one abnormal gene), the provision of genetic counseling and the offering of prenatal diagnostic services to prevent the birth of affected children.

“With 30% of families with a history of thalassaemia being carriers, it is critical to proactively screen and counsel at-risk couples”, it says.

The bill aims to strengthen healthcare systems to provide better access to life-saving treatments, including blood transfusions and iron chelation therapy, for those already diagnosed with the disease.

By increasing public awareness about the inheritance patterns and prevention strategies, the law will empower families to make informed decisions, ultimately reducing the burden of thalassaemia on individuals, families, and the healthcare infrastructure.

“This legislative proposal will help curb the spread of thalassaemia in Pakistan, ensuring better health outcomes for future generations and preventing the associated social and financial burdens”, it reads.

Published in Dawn, March 11th, 2026