State health officials want full access to the DNA of citizens.
Their legislation to undo the state's genetic privacy law has already
been passed by the Minnesota House and Senate.
What will Gov. Tim Pawlenty do?
The 2006 Minnesota Genetic Privacy Law does what all of us want it
to do. It requires written informed consent prior to the collection,
storage, use, or dissemination of our private genetic information by
government and others.
Specifically, the law states that our genetic information may only
be collected and used if we give our written informed consent; it may
be stored only for as long as we consent; and it may only be shared
with others, including researchers and pharmaceutical companies, with
our consent. The consent to allow sharing for specific purposes expires
in a year and must be signed and dated.
This is all good news -- unless Senate File 3138 becomes law.
This legislation would
allow the Minnesota Department of Health (MDH) to exempt the
collection, storage, use and sharing of newborn DNA from the informed
consent requirements of the genetic privacy law. Without informed
consent, MDH would be allowed to contract with hospitals statewide to
prick the heel of newborns, use and analyze the baby's DNA into
adulthood, and give the DNA-filled blood spots to researchers and
others.
If this legislation passes, the informed consent protections of
today's genetic privacy law will not protect any baby born after July
1, 1997 -- the day health officials began building a government "DNA
warehouse" for the purpose of genetic research. On that day, without
legal authority or parent consent, MDH began keeping baby blood and
storing it indefinitely.
Today, according to health officials, the DNA of more than 780,000
children has been filed and claimed as state government property. Their
parents have no idea. By the department's own admission, at least
42,210 of these children have been subjects of genetic research, again
without parent knowledge or consent. Each year, approximately 73,000
children are born and their blood is added to the state's DNA
collection.
In March 2007, an administrative law judge ruled that the genetic
privacy law requires informed consent requirements for the health
department's storage, use and sharing of blood collected through the
newborn genetic testing program. The commissioner of health appealed
the decision and lost. Rather than comply, health officials drafted
this year's legislation to exempt all elements of the testing program
-- specifically collection, storage, use and dissemination to
researchers -- from the genetic privacy law.
If the bill becomes law, parents will find it difficult to protect
their child's genetic privacy. At one of the most vulnerable and
exhausting times in life -- the birth of their baby -- they will have
to be both knowledgeable and assertive. According to the newborn
genetic testing law on the books, parents have the right to object to
the taking and storage of blood, but not the right to be fully informed
about their right to object. The burden will be on parents to figure it
out.
Senate File 3138 violates parent rights, privacy rights, patient
rights and DNA property rights. Citizens young and old have the right
to informed consent and genetic privacy. They also have the right to
not be research subjects, to not incriminate themselves through their
genetic codes, and to be free from involuntary genetic profiling and
genetic registration.
If Pawlenty fails to use his influence or his veto pen to protect
the genetic privacy rights of citizens, individual DNA and private
genetic codes will become government property. What will the governor
do?
Twila Brase is president of the Citizens' Council on Health Care,
which describes its mission as advocating "for patient and physician
freedom, medical innovation, and the right of citizens to a
confidential patient-doctor relationship."