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S.F. No. 1017 - Genetic Information
 
Author: Senator John Marty
 
Prepared By:
 
Date: March 6, 2013



 

SF 1017 makes changes to genetic information provisions and the dissemination of biological specimens and health data.

Section 1 (13.386, subd.3) states that genetic information includes the provisions of 144.192, but not the newborn screening activities under sections 144.125 to 144.128.

Section 2 (144.192) establishes the treatment of biological specimens and health data held by the Department of Health and health boards.

Subdivision 1 defines the following terms:  biological specimen; health data; health oversight; individual; person; program operations; public health practice; representative of the decedent; and research.

Subdivision 2, paragraph (a), authorizes the Commissioner of Health to collect, store, use, and disseminate biological specimens and health data, as provided in this section and as permitted under any other law. 

Paragraph (b) states that this section supplements other provisions of law and does not supersede or repeal other provisions of law applying to the collection, use, storage, or dissemination of biological specimens or health data.

Paragraph (c) states that for purposes of this section genetic information is limited to biological specimens and health data.

Subdivision 3, paragraph (a), authorizes the commissioner to collect, use, store, and disseminate biological specimens and health data to conduct program operations activities, public health practice activities, and health oversight activities.  Unless required by law, the consent of the individual is not required.

Paragraph (b) authorizes, with the approval of the commissioner, the dissemination of biological specimens to establish diagnosis, to provide treatment, to identify persons at risk of illness, or to conduct an epidemiologic investigation to control or prevent the spread of serious disease or to diminish an eminent threat to public health.

Paragraph (c) permits, for purposes of the clinical laboratory improvement amendments proficiency testing, the commissioner to disseminate de-identified biological specimens to state public health laboratories that agree not to attempt to re-identify the specimens.

Paragraph (d) permits the health data to be disseminated as provided under section 13.3805, subd.1, paragraph (b).

Subdivision 4 authorizes the commissioner to collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with federal law.

Subdivision 5 requires the commissioner to store health data according to section 138.17 (government records), and biological specimens according to a specimen storage schedule that is to be developed by the commissioner by July 1, 2013.

Subdivision 6 requires the commissioner to establish appropriate safeguards for the storage of biological specimens with regard to the privacy of the individuals from whom the specimens originated and store the specimens accordingly.  States that when the specimen is destroyed it must be done in a way that prevents the determination of the identity of the individual from whom it originated.

Subdivision 7 applies a number of these provisions to boards of health and community health boards organized under chapter 145A.  Permits these health boards to disseminate health data pursuant to section 13.3805.

Section 3 (144.966) makes a technical change.

Section 4 (144.966, subd.8) states that the nothing in the early hearing detection and intervention program shall be construed to constitute newborn screening activities.

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