PRESS RELEASES
For Immediate Release
Thursday, May 05, 2009
SUCCESS:
Citizen Efforts Protect Genetic Privacy Law
MN
Legislation to Repeal Genetic Privacy Rights at Birth did not Pass
St. Paul/Minneapolis – Engaged citizens across the state of
Minnesota have protected the Minnesota Genetic Privacy Law—and
individual DNA property rights—for another year, says Citizens' Council
of Health (CCHC). The state health department's legislation to repeal
genetic privacy rights at birth did not pass.
"The Minnesota Department of Health must begin immediately to comply
with the
state genetic privacy law by obtaining the required informed written
parent consent
for government storage, use and dissemination of newborn DNA," said
Twila Brase, president of CCHC.
"There is nothing more personal, more private, more yours than your
DNA and your unique genetic code. The law requires express informed
written parent consent for the storage and use of newborn DNA, yet the
Minnesota Department of Health refuses to follow the law. The
rights of the 73,000 babies born each year in Minnesota are being
violated."
she said.
According to an administrative law judge in March 2007, the Minnesota
Department of Health is violating the state genetic privacy law (M.S.
13.386) by storing and conducting genetic research on newborn blood
which has
been collected solely for the purpose of newborn genetic testing. When
state health officials appealed the ruling in July 2007, the Chief
Administrative Law Judge denied
their appeal.
The Minnesota Department of Health came to the legislature in 2008 and
2009 with legislation to exempt government storage, use, and research
on newborn blood and DNA from the law's informed written parent consent
requirements. Republican Governor Tim Pawlenty vetoed the 2008
legislation but did not require his health commissioner to comply with
the genetic privacy law. On March 11, 2009, nine families sued the
Minnesota Department of Health and the State of Minnesota under Chapter
13, the Minnesota Government Data Practices Act.
 Although House File 1341, the health
department's bill to exempt newborns from consent protections in the
genetic privacy law,
was listed for three days on the House Calendar for the Day, Rep. Paul
Thissen (D-Mpls.), chief author of the bill, did not choose to bring
the bill forward for a vote. Since the legislature runs on a 2-year
cycle, HF 1341 and its companion bill, SF 1478, remain alive for
legislative action during the 2010 session. (LEFT: proposed
Department language, HF 1341, lines 1.21 - 1.24)
"This legislation should be dropped. The health department's attempt to
repeal constitutional privacy rights and informed parent consent should
be
ended. Repealing genetic privacy rights at birth, and eliminating
parent consent requirements for government storage, use and analysis of
newborn DNA, would mean the end of genetic privacy rights for all
future generations." said Brase.
"The Minnesota public won a major privacy victory this year. The state
health department bill to repeal
genetic privacy rights and eliminate consent
requirements for government storage and use of newborn DNA did not
pass. We
are grateful to every Minnesotan who sent an email, made a phone call,
came to a hearing, signed a petition to the governor, and let their
voice be heard,"
said Twila Brase, president of CCHC.
Contact:
Twila Brase, President
Citizens' Council on Health Care
651-646-8935 office
Citizens' Council on Health Care is a non-profit, independent health care policy organization that supports free-market ideas in health care.
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