THE PUNJAB THALASSEMIA PREVENTION ACT 2025 (XXVII of 2025) CONTENTS 1. Short title, extent and commencement 2. Definitions 3. Advisory Council 4. Powers and functions of the Council 5. Remuneration 6. Technical Advisory Committee 7. Category of a test 8. Consent Form 9. Fee 10. Laboratories 11. Confidentiality of information 12. Responsibility of PITB 13. Responsibility of head of an Institution 14. Responsibility of a Board 15. Implementation and Monitoring 16. Violation of provisions of this Act 17. Fund of the Council 18. Audit and Accounts 19. Delegation of powers 20. Power to make rules 21. Power to frame regulations 22. Offence to be punishable and triable 23. Cognizance of an offence 24. Act to override other laws 25. Indemnity 26. Removal of difficulties TEXT 1 THE PUNJAB THALASSEMIA PREVENTION ACT 2025 (XXVII of 2025) [2nd May, 2025] An Act to make provisions for the control and prevention of Thalassemia and other genetic orders. Preamble.– WHEREAS early detection, prevention and management of thalassemia and related genetic disorders are essential to reduce the burden of these conditions on the healthcare system; It is hereby enacted as follows: 1. Short title, extent and commencement .– (1) This Act may be cited as the Punjab Thalassemia Prevention Act 2025. (2) It extends to whole of the Punjab. (3) It shall come into force at once. 2. Definitions.– In this Act, unless there is anything repugnant to the subject or context: (a) “Board” means the Board of Intermediate and Secondary Education established under the Punjab Boards of Intermediate and Secondary Education Act, 1976 (XIII of 1976); (b) “Chairperson” means the Chairperson of the Council; (c) “Council” means the Council notified under section 3 of this Act; (d) “data” means the data generated in consequence of a sample or test; (e) “Department” means the Specialized Healthcare and Medical Education Department; (f) “Government” means Government of the Punjab; (g) “Institution” means a public or private school or college and includes Deeni Madaras either registered with any board in the Punjab; (h) “laboratory” means a public or private sector laboratory notified under this Act; (i) “member” means a member of the Council; (j) “PITB” means the Punjab Infor mation Technology Board established under the Punjab Information Technology Board Ordinance 1999 (XLIV of 1999); (k) “PPC” means Pakistan Penal Code; (l) “prescribed” means prescribed by the rules or the regulations; (m) “regulations” means the regulations framed under this Act; (n) “rules” means the rules made under this Act; 1This Act was passed by Provincial Assembly of the Punjab on 22 April 2025; and was assented to by Governor of the Punjab on 02 May 2025; and was published in the Punjab Gazette (Extraordinary), dated: 02 May 2025, pp. 4273-4277. (o) “school” means a public or private school and includes Deeni Madaras registered under the relevant laws; and (p) “student” means a student registered with any Board. 3. Advisory Council.– (1) There shall be an Advisory Council to be notified by the Department after approval by the Government comprising the following: 1) Minister for Specialized Healthcare & Medical Education Chairperson 2) Minister for Health & Population Department Member 3) Parliamentary Secretary, Specialized Healthcare & Medical Education Member 4) Two members, including one female member , of Provincial Assembly of the Punjab to be nominated by the Speaker of the Assembly; Members 5) Secretary, Specialized Healthcare & Medical Education Department Secretary 6) Secretary/Special Secretary (Operations), Health & Population Department Member 7) Secretary/Special Secretary (Operations), Higher Education Department Member 8) Secretary/Special Secretary (Operations), School Education Department Member 9) Secretary/Special Secretary (Operations), Local Government and Community Development Department Member 10) Secretary/Special Secretary (Operations), Auqaf & Religious Affairs Department Member 11) Additional Secretary (Technical) Specialized Healthcare & Medical Education Department Member 12) Vice Chancellor, University of Child Health Sciences, Children’s Hospital, Lahore Member 13) CEO, Punjab Healthcare Commission Member 14) DG, Punjab Thalassemia & other Genetic Disorders Prevention Program Member 15) Director, CEMB Member 16) One Representative of Public & Private Schools (to be nominated by SED) Member 17) One Professor of Hematology, nominated by the Department Member (2) Ten Members, including Chairperson or the person presiding the meeting, shall constitute the quorum for a meeting of the Council, and the Council shall make a decision by majority of its members present and voting, and in case of a tie, the Chairperson or the member presiding the meeting shall have a casting vote. (3) The Council shall meet at least once in three months and its meeting shall be held at such place, date and time as the Chairperson or the person nominated to preside over the meeting may determine. (4) The Chairperson or, in his absence, any member nominated by him shall preside over the meeting of the Council. 4. Powers and functions of the Council .– (1) The Council may recommend to the Government for effective system of genetic counseling and diagnostic facilities accessible to the students of Punjab and take such measures to encourage them to fully utilize it. (2) All individuals tested for the disease(s), if found carrier of trait, shall be given counseling regarding their marrying someone carrying rate and risk of passing on the disease(s) to their offspring. (3) Advisory Council will facilitate early diagnosis, management, complication and prevention of disease(s) through updated education about the latest tests, active role of Punjab Healthcare Commission in the whole process and creation of huge data bank for further policy making. (4) Advisory Council will place a substantive mechanism for formulating tests to be done for the said disease(s) and the referred laboratories, either public or private. (5) Accreditation of the said laboratories will be the sole responsibility of the Advisory Council. (6) The target population and the age group who are to undergo testing will be determined by the Advisory Council. (7) Advisory Council will ensure check on the quality control of Laboratories. (8) The Council will regulate rate of the tests prescribed for the said disease(s). (9) A mechanism will be devised by the Advisory Council for proper referral system. (10) The Council may recommend inclusion of thalassemia diagnosed children in the list of special children and may also recommend issuance of special health cards for their treatments at public and private hospitals. (11) The Council will further recommend registration of thalassemia diagnosed children in NADRA at the time of issuance of form -B or smart card or CNIC and would recommend to make arrangements for provision of financial assistance to the thalassemia children. 5. Remuneration.– No remuneration shall be paid to the members of the Council. 6. Technical Advisory Committee .– The C ouncil shall, for a specified period, constitute a Technical Advisory Committee, consisting of the following: a) Additional Secretary (Technical) of the Specialized Healthcare and Medical Education Department; b) Additional Secretary (Technical) of the Health & Population Department; c) a representative of Secretary, School Education Department not below the rank of Deputy Secretary; d) a representative of Secretary, Higher Education Department not below the rank of Deputy Secretary; e) Secretary, Punjab Blood Transfusion Authority, Punjab; f) Director, Institute of Blood Transfusion Services, Punjab; g) a representative of Punjab Healthcare Commission; h) One Professor of Medicine to be nominated by Advisory Council; i) One Professor of Hematology to be nominated by Advisory Council; j) One Professor of Pediatrics to be nominated by Advisory Council; k) a representative of the Thalassemia organizations, to be nominated by the Advisory Council; l) a representative of PITB; and m) a legal expert. 7. Category of a test.– The Department shall, after approval by the Government, on the recommendation of the Advisory Council, notify a category of test or more than one category of test, as the case may be, in the official Gazette. 8. Consent Form.– Advisory Council shall formulate the proforma containing all the parameters required for the informed consent. 9. Fee.– Price fixation shall be done through the Punjab Healthcare Commission under provision of “PRICING OF HEALTHCARE SERVICES REGULATION 2021” ; provided that the Government may make arrangements for free of cost testing facility for the purpose. 10. Laboratories.– (1) No laboratory or its authorized person shall take sample or conduct test of a student under this Act unless it is notified by the Department on the recommendation of the Council. (2) The laboratory shall conduct the test in accordance with the standards a nd procedures as may be prescribed by the Department on the recommendation of the Council. (3) A laboratory shall, after taking the sample or conducting the test, as the case may be, issue acknowledgment receipt to the student at once and forward its duplicate copy to the head of the concerned institution within three working days. (4) The laboratory shall conclude the test within ten days from taking the sample and forward its result to the Punjab Information Technology Board electronically within five days after its conclusion. (5) The laboratory shall maintain the confidentiality of the results and shall not share it or any relevant information with any unauthorized person. 11. Confidentiality of information .– No one shall share the information whether personal or medical, with any other individual or collective, personal or medical to any Medical Company, Pharmaceutical company, local donor, international donor, local/international NGOs/INGOs or any other entit y without the approval of the Government. 12. Responsibility of PITB .– (1) The PITB shall establish a separate portal for receiving and maintaining the data from the laboratories under this Act. (2) The data of the test received from the laboratories shall be k ept in the custody of the PITB and its secrecy shall be maintained. 13. Responsibility of head of an Institution .– The head of an institution shall ensure that students enrolled in the institution, has provided the sample or undergone a test under this Act b y a notified laboratory at the time of enrollment or submission of forms to the Board, whichever is earlier. 14. Responsibility of a Board .– A Board shall, before registration of student, ensure that the receipt regarding provision of a sample or conduct of test under this Act is enclosed with the form for registration. 15. Implementation and Monitoring .– The Council, Specialized Healthcare and Medical Education Department, School Education Department, Higher Education Department, Punjab Healthcare Commission an d Board shall be responsible for implementation of the provisions of this act and monitoring thereunder. 16. Violation of provisions of this Act .– (1) If a Government employee is found involved in violation of any provision of this Act, he shall be proceeded against under the Punjab Employees Efficiency and Disciplinary Accountability Act 2006 (XII of 2006). (2) If a Government employee is found involved in unauthorized release of information of the data or generation of a fake result, he shall be liable to be prosecuted under this Act and the Punjab Employees Efficiency and Disciplinary Accountability Act 2006 (XII of 2006). (3) In case an employee of a private laboratory notified under this Act is found involved in unauthorized release of information of the data or generation of a fake result, he shall be liable to be proceeded against under PPC and the Labs involved in any malpractice shall face proceedings which may include blacklisting. 17. Fund of the Council.– (1) The Government shall establish a fund. (2) The Council shall maintain the fund in the prescribed manner. (3) The fund shall consists of: (a) grants received from the Government through budgetary allocations; (b) income received from tests fees and all other sums received by the Council; (c) money received from the Federal Government or any international organization by way of grant, loan, advance or others; (d) money received from the disposal of movable and immovable p roperty of the Council; (e) and any other money received by the Council. 18. Audit and Accounts .– (1) The Council shall maintain complete and accurate books of accounts of its actual expenses and receipts in the manner prescribed. (2) The Council shall approve the annual budget of the Authority in the prescribed manner. (3) The accounts of the Council shall be audited annually by the Auditor General of Pakistan. 19. Delegation of powers .– The Council may delegate any of its functions to committee or any other officer of the Council except the following functions: (a) framing of regulations; (b) approval of budget of the Council in addition to the budget allocated by the Government; and (c) making of policies. 20. Power to make rules .– (1) The Government may, by notification in the official Gazette, on the recommendation of the Council , make rules for carrying out the purposes of this Act. (2) Notwithstanding the generality of the power provided under sub-section (1), Government may make rules for the purposes of this Act. 21. Power to frame regulations .– The Council may, subject to the provisions of this Act and the rules made thereunder , and after approval by the Government, frame regulations for conduct of its business. 22. Offence to be punishable and triable .– 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. 23. Cognizance of an offence .– No court shall take cognizance of an offence under this Act except upon a complaint in writing by the Secretary, Specialized Healthcare and Medical Education Department or Chief Executive Officer, District Health Authority or any officer on their behalf authorized by them. 24. Act to override other laws .– This Act shall have effect notwithstanding anything contained in any other law for the time being in force. 25. Indemnity.– No suit, prosecution or other legal proceeding shall be made against any person for anything which is done in good faith or intended to be done under this Act. 26. Removal of difficulties .– If any difficulty arises in giving effect to any of the provisions of this Act, Government may, by notification in the official Gazette, make such order not inconsistent with the provisions of this Act, as it may consider necessary for the purpose of removal of difficulty.