SF 3138

Conference Committee Report - 85th Legislature (2007 - 2008) Posted on 12/15/2009 12:00am

A bill for an act
relating to health; changing provisions for handling genetic information;
amending Minnesota Statutes 2006, section 13.386, subdivision 3; Minnesota
Statutes 2007 Supplement, section 144.125, subdivision 3.

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

Section 1.

Minnesota Statutes 2006, section 13.386, subdivision 3, is amended to read:

Subd. 3.

Collection, storage, use, and dissemination of genetic information.

new text begin (a)
new text end Unless otherwise expressly provided by law, genetic information about an individual:

(1) may be collected by a government entity, as defined in section 13.02, subdivision
7a, or any other person only with the written informed consent of the individual;

(2) may be used only for purposes to which the individual has given written
informed consent;

(3) may be stored only for a period of time to which the individual has given written
informed consent; and

(4) may be disseminated only:

(i) with the individual's written informed consent; or

(ii) if necessary in order to accomplish purposes described by clause (2). A consent
to disseminate genetic information under item (i) must be signed and dated. Unless
otherwise provided by law, such a consent is valid for one year or for a lesser period
specified in the consent.

new text begin (b) Notwithstanding this subdivision, the Department of Health's collection, storage,
use, and dissemination of genetic information and specimens for testing infants for
heritable and congenital disorders are governed by sections 144.125 to 144.128.
new text end

Sec. 2.

Minnesota Statutes 2007 Supplement, section 144.125, subdivision 3, is
amended to read:

Subd. 3.

Objection of parents to test.

new text begin (a) new text end Persons with a duty to perform testing
under subdivision 1 deleted text begin shall advise deleted text end new text begin must provide new text end parents of infants new text begin with a document
explaining: new text end (1) that the blood or tissue samples used to perform testing thereunder as well
as the results of such testing may be retained by the Department of Health deleted text begin , deleted text end new text begin ; new text end (2) the benefit
of retaining the blood or tissue sample deleted text begin , and deleted text end new text begin ; new text end (3) that the following deleted text begin options deleted text end new text begin alternatives new text end
are available to them with respect to the testing: (i) to decline to have the tests, deleted text begin or deleted text end (ii) to
elect to have the tests new text begin , new text end but to require that all blood samples and records of test results
be destroyed within 24 months of the testing new text begin , or (iii) to decline to have the test results
and samples used for public health studies and research, or both; (4) the data that will
be collected as a result of the testing; and (5) the ways in which the samples and data
collected will be stored and used new text end .

new text begin (b) The document provided under paragraph (a) must inform parents of their right
to object under paragraph (a), clause (3). new text end If the parents of an infant object in writing to
testing for heritable and congenital disorders or elect to require that blood samples and
test results be destroyed, new text begin or elect to decline to have the test results used for public health
studies and research, new text end the objection or election shall be recorded on a form that is signed by
a parent or legal guardian and made part of the infant's medical record. new text begin When a parent
objects, the Department of Health must follow the requirements of paragraph (a), clause
(3), and section 144.128. new text end A written objection exempts an infant from the requirements of
this section and section 144.128.

new text begin (c) For purposes of this subdivision, "public health studies and research" includes
calibrating newborn screening equipment, evaluating existing newborn screening tests to
reduce the number of false positive and false negative results, studying the development
of new newborn screening tests for heritable and congenital disorders, and other
population-based health studies.
new text end

Sec. 3. new text begin NEWBORN SCREENING REPORT.
new text end

new text begin By January 15, 2009, the Department of Health shall report and make
recommendations to the legislature on its current efforts for ensuring and enhancing
how parents of newborns are fully informed about the newborn screening program and
of their rights and options regarding: (1) testing; (2) storage; (3) public health practices,
studies, and research; and (4) the ability to opt out of the collection of data and specimens
related to the testing.
new text end