1.1 	A bill for an act
1.2 	relating to health; making changes to birth defect information system;amending 
1.3 	Minnesota Statutes 2016, sections 144.2215, subdivision 1; 144.2216, subdivision 
1.4 	4.
1.5 	BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:

1.6 	Section 1. Minnesota Statutes 2016, section 144.2215, subdivision 1, is amended to read:
1.7 		Subdivision 1.Establishment. The commissioner of health shall establish and maintain 
1.8 	an information system containing data on the cause, treatment, prevention, and cure of major 
1.9 	birth defects. The commissioner shall consult with representatives and experts in 
1.10 	epidemiology, medicine, insurance, health maintenance organizations, genetics, consumers, 
1.11 	and voluntary organizations in developing the system and may phase in the implementation 
1.12 	of the system. Sections 144.2215 to 144.2219 apply to birth defects that develop during 
1.13 	pregnancy and:
1.14 	(1) result in live births; or
1.15 	(2) result in fetal deaths, reportable under section 144.222.

1.16 	Sec. 2. Minnesota Statutes 2016, section 144.2216, subdivision 4, is amended to read:
1.17 		Subd. 4.Opt out. A parent or legal guardian must be informed by the commissioner at 
1.18 	the time of the initial data collection that they may request removal at any time of personal 
1.19 	identifying information concerning a child from the birth defects information system using 
1.20 	a written form prescribed by the commissioner. The commissioner shall advise parents or 
1.21 	legal guardians of infants:
1.22 	(1) that the information on birth defects may be retained by the Department of Health;
2.1 	(2) of the benefit and privacy implications of retaining birth defects records;
2.2 	(3) that they may elect to have the birth defects information collected once, within one 
2.3 	year of birth or fetal death, as defined in section 144.222, but to require that all personally 
2.4 	identifying information be destroyed immediately upon the commissioner receiving the 
2.5 	information. If the parents of an infant or legal guardians object in writing to the maintaining 
2.6 	of birth defects information, the objection or election shall be recorded on a form that is 
2.7 	signed by a parent or legal guardian and submitted to the commissioner of health; and
2.8 	(4) that if the parent or legal guardian chooses to opt-out, the commissioner will not be 
2.9 	able to inform the parent or legal guardian of a child of information related to the prevention, 
2.10 	treatment, or cause of a particular birth defect.