1.1 	A bill for an act
1.2 	relating to health; regulating genetic testing; requiring certain notices and 
1.3 	information sharing; providing for the destruction of certain samples and test 
1.4 	results;amending Minnesota Statutes 2004, sections 144.125, subdivision 3, by 
1.5 	adding subdivisions; 144.128.
1.6 	BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:

1.7 	Section 1. Minnesota Statutes 2004, section 144.125, subdivision 3, is amended to read:
1.8 		Subd. 3.Objection of parents to test. Persons with a duty to perform testing under 
1.9 	subdivision 1 shall advise parents of infants (1) that the blood or tissue samples used to 
1.10 	perform testing thereunder as well as the results of such testing may be retained by the 
1.11 	Department of Health indefinitely, (2) the benefit of retaining the blood or tissue sample, 
1.12 	and (3) that the following options are available to them with respect to the testing: (i) to 
1.13 	decline to have the tests, or (ii) to elect to have the tests but to require that all blood 
1.14 	samples and records of test results be destroyed within 24 months of the testing. If the 
1.15 	parents of an infant object in writing to testing for heritable and congenital disorders or 
1.16 	elect to require that blood samples and test results be destroyed, the objection or election 
1.17 	shall be recorded on a form that is signed by a parent or legal guardian and made part of 
1.18 	the infant's medical record. A written objection exempts an infant from the requirements 
1.19 	of this section and section  144.128. 

1.20 	Sec. 2. Minnesota Statutes 2004, section 144.125, is amended by adding a subdivision 
1.21 	to read:
1.22 		Subd. 4. Request to destroy samples and test results.  The commissioner shall 
1.23 	prepare a separate form for use by parents or by adults who were tested as minors to direct 
2.1 	that blood samples and test results be destroyed. The commissioner shall comply with 
2.2 	the destruction request within 45 days after receiving it. 

2.3 	Sec. 3. Minnesota Statutes 2004, section 144.125, is amended by adding a subdivision 
2.4 	to read:
2.5 		Subd. 5. Newborn screening Web site.  The Department of Health newborn 
2.6 	screening Web site shall contain a list of all tests currently being performed. By April 
2.7 	1 of each year, the department shall post the total number of newborn screening results 
2.8 	held by the department on the previous December 31 and shall provide the following 
2.9 	information for the previous calendar year:
2.10 	(1) the number of screenings performed; 
2.11 	(2) the number of individuals who opted out of screening; 
2.12 	(3) the number of samples destroyed; 
2.13 	(4) the number of individuals whose test results were destroyed; and 
2.14 	(5) the number of samples released for research. 

2.15 	Sec. 4. Minnesota Statutes 2004, section 144.128, is amended to read:
2.16 	144.128 COMMISSIONER'S DUTIES.
2.17 	The commissioner shall:
2.18 	(1) notify the physicians of newborns tested of the results of the tests performed;
2.19 	(2) make referrals for the necessary treatment of diagnosed cases of heritable and 
2.20 	congenital disorders when treatment is indicated;
2.21 	(3) maintain a registry of the cases of heritable and congenital disorders detected by 
2.22 	the screening program for the purpose of follow-up services; and
2.23 	(4) notify parents or adults who were tested as minors and who request destruction 
2.24 	of samples and test results that the samples and test results have been destroyed; and 
2.25 	(5) adopt rules to carry out sections  144.125 to  144.128.