1.1 	A bill for an act
1.2 	relating to data practices; regulating genetic testing; providing for the 
1.3 	determination of tests to be administered; modifying the manner of obtaining 
1.4 	parental consent; providing for parental direction to destroy testing results; 
1.5 	amending Minnesota Statutes 2004, sections 144.125, subdivision 2, by adding 
1.6 	subdivisions; 144.128.
1.7 	BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:

1.8 	Section 1. Minnesota Statutes 2004, section 144.125, subdivision 2, is amended to read:
1.9 		Subd. 2.Determination of tests to be administered. The commissioner shall 
1.10 	periodically revise the list of tests to be administered for determining the presence of a 
1.11 	heritable or congenital disorder. Revisions to the list shall reflect advances in medical 
1.12 	science, new and improved testing methods, or other factors that will improve the public 
1.13 	health. In determining whether a test must be administered, the commissioner shall take 
1.14 	into consideration the adequacy of laboratory methods to detect the heritable or congenital 
1.15 	disorder, the ability to treat or prevent medical conditions caused by the heritable or 
1.16 	congenital disorder, and the severity of the medical conditions caused by the heritable or 
1.17 	congenital disorder.  Tests to determine the presence of a genetic condition that is not a 
1.18 	heritable or congenital disorder may be done only as authorized by law. The list of tests to 
1.19 	be performed may be revised if the changes are recommended by the advisory committee 
1.20 	established under section  144.1255, approved by the commissioner, and published in the 
1.21 	State Register. The revision is exempt from the rulemaking requirements in chapter 14, 
1.22 	and sections  14.385 and  14.386 do not apply. 

1.23 	Sec. 2. Minnesota Statutes 2004, section 144.125, is amended by adding a subdivision 
1.24 	to read:
2.1 		Subd. 4.Parental destruction directive. The commissioner shall prepare a separate 
2.2 	form for parents' use to direct that blood samples and records of test results be destroyed 
2.3 	not later than 30 days after receipt of the form. The form must be provided to the parent 
2.4 	of the newborn. The form must reference available information about data practices 
2.5 	and blood sample storage policies. If the parent elects to have test results and blood 
2.6 	samples destroyed, the form must be signed by the parent and must not require a witness 
2.7 	or notarization of the parent's signature. 

2.8 	Sec. 3. Minnesota Statutes 2004, section 144.125, is amended by adding a subdivision 
2.9 	to read:
2.10 		Subd. 5.Newborn screening Web site. The Department of Health newborn 
2.11 	screening Web site shall contain a list of all tests currently being performed. By April 
2.12 	1 of each year the department shall post the total number of newborn screening results 
2.13 	held by the department on the previous December 31 and shall provide the following 
2.14 	information for the previous calendar year:
2.15 	(1) the number of screenings performed;
2.16 	(2) the number of individuals who opted out of screening;
2.17 	(3) the number of samples destroyed;
2.18 	(4) the number of individuals whose test results were destroyed; and
2.19 	(5) the number of samples released for research.

2.20 	Sec. 4. Minnesota Statutes 2004, section 144.128, is amended to read:
2.21 	144.128 COMMISSIONER'S DUTIES.
2.22 	The commissioner shall:
2.23 	(1) notify the physicians of newborns tested of the results of the tests performed;
2.24 	(2) make referrals for the necessary treatment of diagnosed cases of heritable and 
2.25 	congenital disorders when treatment is indicated;
2.26 	(3) maintain a registry of the cases of heritable and congenital disorders detected by 
2.27 	the screening program for the purpose of follow-up services; and
2.28 	(4) provide test results to all parents who elect state testing; 
2.29 	(5) provide a certificate of destruction to all parents who elect to have test results and 
2.30 	blood specimens destroyed; and 
2.31 	(6) adopt rules to carry out sections  144.125 to  144.128.