SF 3344

1st Engrossment - 84th Legislature (2005 - 2006) Posted on 12/15/2009 12:00am

A bill for an act
relating to data practices; regulating genetic testing; providing for the
determination of tests to be administered; modifying the manner of obtaining
parental consent; providing for parental direction to destroy testing results;
amending Minnesota Statutes 2004, sections 144.125, subdivision 2, by adding
subdivisions; 144.128.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:

Section 1.

Minnesota Statutes 2004, section 144.125, subdivision 2, is amended to read:

Subd. 2.

Determination of tests to be administered.

The commissioner shall
periodically revise the list of tests to be administered for determining the presence of a
heritable or congenital disorder. Revisions to the list shall reflect advances in medical
science, new and improved testing methods, or other factors that will improve the public
health. In determining whether a test must be administered, the commissioner shall take
into consideration the adequacy of laboratory methods to detect the heritable or congenital
disorder, the ability to treat or prevent medical conditions caused by the heritable or
congenital disorder, and the severity of the medical conditions caused by the heritable or
congenital disorder. new text begin Tests to determine the presence of a genetic condition that is not a
heritable or congenital disorder may be done only as authorized by law. new text end The list of tests to
be performed may be revised if the changes are recommended by the advisory committee
established under section 144.1255, approved by the commissioner, and published in the
State Register. The revision is exempt from the rulemaking requirements in chapter 14,
and sections 14.385 and 14.386 do not apply.

Sec. 2.

Minnesota Statutes 2004, section 144.125, is amended by adding a subdivision
to read:

new text begin Subd. 4. new text end

new text begin Parental destruction directive. new text end

new text begin The commissioner shall prepare a separate
form for parents' use to direct that blood samples and records of test results be destroyed
not later than 30 days after receipt of the form. The form must be provided to the parent
of the newborn. The form must reference available information about data practices
and blood sample storage policies. If the parent elects to have test results and blood
samples destroyed, the form must be signed by the parent and must not require a witness
or notarization of the parent's signature.
new text end

Sec. 3.

Minnesota Statutes 2004, section 144.125, is amended by adding a subdivision
to read:

new text begin Subd. 5. new text end

new text begin Newborn screening Web site. new text end

new text begin The Department of Health newborn
screening Web site shall contain a list of all tests currently being performed. By April
1 of each year the department shall post the total number of newborn screening results
held by the department on the previous December 31 and shall provide the following
information for the previous calendar year:
new text end

new text begin (1) the number of screenings performed;
new text end

new text begin (2) the number of individuals who opted out of screening;
new text end

new text begin (3) the number of samples destroyed;
new text end

new text begin (4) the number of individuals whose test results were destroyed; and
new text end

new text begin (5) the number of samples released for research.
new text end

Sec. 4.

Minnesota Statutes 2004, section 144.128, is amended to read:

144.128 COMMISSIONER'S DUTIES.

The commissioner shall:

(1) notify the physicians of newborns tested of the results of the tests performed;

(2) make referrals for the necessary treatment of diagnosed cases of heritable and
congenital disorders when treatment is indicated;

(3) maintain a registry of the cases of heritable and congenital disorders detected by
the screening program for the purpose of follow-up services; deleted text begin and
deleted text end

(4) new text begin provide test results to all parents who elect state testing;
new text end

new text begin (5) provide a certificate of destruction to all parents who elect to have test results and
blood specimens destroyed; and
new text end

new text begin (6) new text end adopt rules to carry out sections 144.125 to 144.128.