PROVINCIAL ASSEMBLY OF SINDH NOTIFICATION
KARACHI, THE 27TH JANUARY, 2014.
NO.PAS/Legis-B-08/2013-
The Sindh Prevention and Control of Thalassemia Bill, 2013 having been
passed by the Provincial Assembly of Sindh on 19th September, 2013
and assented to by the Governor of Sindh on 5th November, 2013 is
hereby published as an Act of the Legislature of Sindh.
THE SINDH PREVENTION
AND CONTROL OF THALASSEMIA ACT, 2013.
SINDH ACT NO. I OF 2014.
AN
ACT
policies as it deems necessary or
appropriate, for the purposes of producing and distributing informational and
educational materials.
|
4. (1) Government shall design and follow a
strong and effective system and shall introduce and setup system of Genetic
Counselling and diagnostic facilities for the citizens of Sindh, and shall
take measures to encourage the citizens to take the counselling and blood
test to diagnose thalassemia trait status.
(2)
A non-governmental organization may provide blood
transfusion to thalassemia patients.
(3)
Government shall ensure easy access to diagnostic
facilities for diagnosis of thalassemia carriers.
|
State
obligation to take affirmative action.
|
|
5. (1) The health care facility treating the
thalassemia patients shall ensure that blood relatives of these children are
all screened for thalassemia.
(2) The
blood relatives of thalassemia patients who are marrying shall be advised and
counseled to obtain a pre-marital blood screening to ensure that they are not
carrying the trait.
(3) Antenatal
tests shall be carried out on pregnant women known who are known carriers and
whose spouses are also carrier for the trait, subject to approval having been
obtained from the pregnant women and their spouses.
(4) All
Non-governmental organization centres dealing with thalassemia shall ensure
that ten percent of their budget shall be spent on developing facilities for
thalassemia and prenatal diagnosis of thallassamia.
(5) The
health care facility shall provide counselling facilities for relatives of
patients on risk of consanguineous marriages and on their chances of having
thalassemia children.
(6) For
the purposes of pre-marital testing the partners shall have their blood
indices done if both the partners have blood indices showing microcytosis
their hemoglobin electrophoresis should be undertaken to ensure that they are
not carrying the trait.
(7) Antenatal
testing shall be carried out, with the consent of the person being tested, in
all pregnant women who are known carriers and whose spouses are also known
carriers. Diagnosis of the disease shall be carried out by chronic villous
sampling and polymerase chain reaction to be carried out in first trimester
at a center or hospital which has the facility to carry out such test and
procedure.
|
Blood
test for thalassemia before marriage.
|
|
6. (1) The test results shall be reported to
those who are tested and if they are carriers of trait, they shall be given
counselling regarding their marrying someone carrying trait and the risk of
passing on the disease of their offspring.
(2)
The test results shall be entered into a data bank
for registration of carriers of the trait.
(3)
Antenatal test results shall be reported to the women
tested and their spouses.
|
Reporting
of test result.
|
|
7.
All individuals who are or shall ever be in the reproductive phase (capable
to bearing children) should have their thalassemia status checked by a simple
blood test called hemoglobin electrophoresis. No tests shall be conducted or
samples obtained from any individual on reliance of anything contained in
this Act, without consent of the person on whom such test is being conducted
or from whom the sample is being obtained.
|
Compulsory
test.
|
|
8. (1) In case a health care facility fails
to carry out the necessary screening, the
|
Penalty.
|
health care facility shall be
held negligent to perform its duty and shall be charged a penalty of rupees one
hundred thousand.
(2)
In case any health care facility or any health care
provider or medical practitioner or any other person conducts any tests for
thalassemia screening or obtains any samples from any person for the purposes
of thalassemia screening, without the consent of the person on whom such tests
are being conducted or from whom such samples have been collected shall be
punishable under section 337E of the Pakistan Penal Code, 1860.
(3)
It shall be compulsory for health care facility to
provide detailed genetic counselling with information on pattern of disease and
trait transmission, and if the health care facility does not provide written
and oral counselling they shall be deemed to have been negligent of their duty
and shall be penalized.
9. Establishment of the Thalassemia and Hemoglobinopathy Foundation.
(1) Government
shall by notification establish a Foundation to be known as the Thalassemia and
Hemoglobinopathy Foundation.
(2) The
Foundation shall be a body corporate having perpetual succession and a common
seal with power to acquire, hold and dispose of property, both movable and
immovable, and shall by the said name sue and be sued.
(3) The
Head Office of the Foundation shall be at Karachi.
(4) The
Foundation shall take all measures which it deems necessary for the promotion,
development and financing of Thalassemia and hemoglobinopathy Centres across
the Province for the prevention and treatment of Thalassemia and to implement
the provisions of this Act.
(5) The
composition and governance of the Foundation shall be notified by Government.
(6) The
Foundation shall establish a Fund to be known as the Thalassemia and
Hemoglobinopathy Foundation Fund which shall vest in the Foundation and to
which shall be credited -
(a)
grants made by Government and the Federal Government
and
Local Bodies;
(b)
income from investments made by the Foundation;
(c)
donations and endowments;
(d)
revolving funds placed by Government at the disposal
of the Foundation; and
(e)
all other sums received by the Foundation and
income from
other sources.
10. Power to make rules.
Government may by notification in official Gazette,
make rules for carrying out the purposes of this Act.
11. Offence to be punishable and triable.
Notwithstanding anything contained in the Code of
Criminal Procedure 1898, an offence punishable under this Act shall be bail
able and triable under the provisions of this Act by a Judicial Magistrate.
12. Cognizance of an offence. No court shall take cognizance of an offence under this
Act except upon a complaint in writing by the Secretary Health Services or
District Health Officer or any other officer on his behalf authorized by him.
13. Ordinance to override other laws etc.
This Act shall have effect notwithstanding anything
contained in any other law for the time being in force.
14. Indemnity.
No suit, prosecution or other legal proceeding shall be
made against any person for anything which is in good faith done or intended to
be done under this Act.
________
BY ORDER OF THE
SPEAKER
PROVINCIAL ASSEMBLY
OF SINDH
G.M.UMAR FAROOQ
SECRETARY
PROVINCIAL ASSEMBLY OF
SINDH
No comments:
Post a Comment