THE PUNJAB
THALASSEMIA PREVENTION ACT 2025
(Act XXVII of
2025)
C O N T E N T
S
Section Heading
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.
[1]THE PUNJAB THALASSEMIA PREVENTION ACT 2025
(ACT 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 Information
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;
(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, Childrens 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 Council 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 and 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 entity 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 kept 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 by 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 and 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 property 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.
[1]This Act was passed by Provincial Assembly
of the Punjab on 22 April 2025; assented to by the Governor of the Punjab on 02
May 2025; and was published in the Punjab Gazette (Extraordinary), dated 02 May
2025, pages 4273-77.