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HF 3438

2nd Engrossment - 85th Legislature (2007 - 2008) Posted on 12/15/2009 12:00am

KEY: stricken = removed, old language.
underscored = added, new language.

Current Version - 2nd Engrossment

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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 endUnless 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 paragraph (a), the Department of Health's collection, storage,
use, and dissemination of genetic information and blood 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 endPersons with a duty to perform testing
under subdivision 1 deleted text beginshall advisedeleted text end new text beginmust provide new text endparentsnew text begin or legal guardiansnew text end of infants new text beginwith
a document explaining:
new text end(1) that the blood deleted text beginor tissuedeleted text end samples used to perform testing
thereunder as well as the results of such testing may be retained by the Department of
Healthdeleted text begin,deleted text endnew text begin;new text end (2) the benefit of retaining the blood deleted text beginor tissuedeleted text end sampledeleted text begin, anddeleted text endnew text begin;new text end (3) that the following
deleted text begin optionsdeleted text endnew text begin alternativesnew text end are available to them with respect to the testing: (i) to decline to
have the tests, or (ii) to elect to have the testsnew text begin,new text end but to require that all blood samples and
records of test results be destroyed within 24 months of the testingnew text begin or that the test results
and samples not be 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 or legal
guardians of their right to object under paragraph (a), clause (3).
new text endIf deleted text beginthe parentsdeleted text endnew text begin a parent or
legal guardian
new text end of an infant deleted text beginobjectdeleted text endnew text begin objectsnew text end in writing to testing for heritable and congenital
disorders or deleted text beginelectdeleted text end new text beginelectsnew text end to require that blood samples and test results be destroyeddeleted text begin,deleted text end new text beginor that
the test results not be used for public health studies and research,
new text endthe 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 beginWhen a parent or legal guardian objects, the Department of Health
must follow the requirements of paragraph (a), clause (3), and section 144.128.
new text endA 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 beginNEWBORN 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; (4) the ability to opt out of the collection of data and specimens related to
the testing; and (5) the ability to seek private testing.
new text end