CCHC releases “Newborn Rights” notification to assist parents of new babies during hospitalization

CCHC MEDIA RELEASE
Thursday, January 29, 2009
For Immediate Release

CCHC releases “Newborn Rights” notification to
assist parents of new babies during hospitalization

 

Document will help parents protect their baby’s privacy rights related to newborn
genetic testing, and state government storage of and research on newborn DNA

Minneapolis/Saint Paul – To give parents a tangible tool to protect the privacy and civil rights of their newborn babies, Citizens’ Council on Health Care has released a “Newborn Rights” notification document for use during hospitalization.

Citizens’ Council on Health Care (CCHC) also released the following statement from CCHC’s president, Twila Brase:

“Many parents have told us stories of the difficulties they’ve had trying to protect their newborn babies while at the hospital. Often the hospital staff knows nothing about the options parents have under the Minnesota newborn genetic testing law. Most don’t even know about the Minnesota genetic privacy law and its written consent requirements. Some mothers and fathers have awakened to the sound of their baby crying, only to learn that the baby’s blood had already been taken without their consent.

“To help parents protect their children, Citizens’ Council on Health Care is today releasing a notification form for parents to use in the hospital after the delivery of their baby. This simple form can be copied and posted on the door, taped to the bassinet, or placed wherever the parents think best. It can be handed to staff and used by the parents to notify the lab technicians, nurses, and doctors that they want to be contacted before anyone takes blood from their baby’s heel.

“For six years, CCHC has been calling on the Minnesota Department of Health to fully inform parents of their right to protect their newborn’s genetic privacy and DNA property rights. The Department has steadfastly refused. They have also failed to follow the required informed written consent requirements of Minnesota’s genetic privacy law. Last year, they sought to exempt themselves from the law, and when they were unsuccessful, they continued to violate it. To this day, there is no consent form, and the warehousing of baby DNA continues unabated.

“Today, more than 815,000 children have their DNA warehoused in the Minnesota Department of Health and more than 1.5 million children have their genetic testing results in a health department database. Over 52,000 children have been the subjects of genetic research without their parent’s knowledge or consent.

“Until the state health department begins to respect the civil and statutory rights of babies and families, we will do all we can to help parents protect their children’s genetic privacy and DNA property rights before they are stolen by the Minnesota Department of Health.”

FMI:
Twila Brase, President
651-646-8935
info@cchconline.org

– CCHC –

 

Citizens’ Council on Health Care supports freedom for patients and doctors, medical
innovation, and the right to a confidential patient-doctor relationship.

Minnesota Department of Health Continues to Store Baby DNA without Required

MEDIA RELEASE
Wednesday, December 10, 2008
For Immediate Release

Minnesota Department of Health Continues to Store Baby DNA without Required

 

Parent Consent; Violates Genetic Privacy Law…and Governor’s Veto

 

 

CCHC calls on Governor Pawlenty to require compliance with state law

St. Paul/Minneapolis – In a press conference held today, concerned parents and the Citizens’ Council on Health Care (CCHC) called on Governor Tim Pawlenty to require his Commissioner of Health to cease and desist the warehousing of newborn blood and baby DNA without informed, written parent consent.

“Despite Governor Pawlenty’s veto of the health department’s DNA warehousing bill last legislative session…we have confirmed that the Minnesota Department of Health is continuing to warehouse baby DNA without parent consent. This is a direct violation of the genetic privacy and DNA property rights of parents and children,” said Twila Brase, president of CCHC.

DeEtta Moos, mother of four children, said, “Last session, there was an attempt to undercut Judge Neilson’s ruling, but thanks to Governor Pawlenty’s veto, the Minnesota Genetic Privacy Law still demands the requirement of parental consent for storage of blood and any purposes beyond the initial testing.”

Ryan Sibinski, expectant father of twins, expressed his disappointment saying, “My wife and I are acutely aware that storage of newborn DNA is still being done illegally by the MN Department of Health.  We thought the Governor’s veto was supposed to solve this, but we have now discovered that the storage continues.”

Mr. Sibinski continued, “In two months or less, our babies will be born. I request here today that the Department of Health make sure that I am clearly asked to consent to the storage, use, and sharing of my children’s blood and DNA.   This is my legal right under the law.”

Attorney Nathan Hansen, who has been attempting to obtain public documents regarding the transfer and use of newborn DNA for research studies, said, “No excuse has been given by the Department for this information not to be handed over.”

Notable History:

• August 1, 2006 – Minnesota Genetic Privacy Law (M.S. 13.386) becomes effective. Informed written consent required for collection, storage, use and dissemination of genetic information by government and others.
• January 23, 2007 – At request of concerned citizens, a public hearing was held on the health department’s proposed revision to the newborn screening rule.
• March 23, 2007 – Administrative Law Judge (ALJ) Barbara Neilsen rules that the Minnesota Department of Health (MDH) is violating the 2006 state genetic privacy law’s informed written consent requirements for storage, use and dissemination.
• July 3, 2007 – Chief Administrative Law Judge Raymond R. Krause denies Health Commissioner Dianne Mandernach’s appeal of the Neilsen ruling.
• August 29, 2007 – Commissioner Mandernach withdraws the proposed revision to the newborn screening rule.
• February 25, 2008 – Legislation introduced in the Minnesota legislature to exempt the newborn screening program (collection, storage, use, and dissemination) from the genetic privacy law’s requirements for informed, written consent.
• May 19, 2008 – Governor vetoes S.F. 3138, prohibiting an exemption to the genetic privacy law’s consent requirements. He mentions ALJ ruling in his veto letter.
• November 18, 2008 – David Orren, MDH Chief Legal Counsel, confirms to CCHC that MDH continues to store newborn blood without consent.

Ms. Brase called on Governor Pawlenty to act, saying, “We call on Governor Pawlenty to take immediate steps to assure the public that he supports the rule of law, and holds his administration accountable to follow the law. Let me suggest that he issue a statement today guaranteeing the health department’s compliance with the written informed consent requirements of the genetic privacy law. He could decree that no newborn blood be warehoused, used for research, or shared with others without informed written parent consent. He could order the health department to release public documents in compliance with the Government Data Practices Act. And he could also promise to dismantle the state’s DNA warehouse, protecting the genetic privacy rights of the more than 780,000 children whose DNA has been claimed by state government and warehoused without consent.”

-CCHC-

Links to the Governor’s veto letter, the Administrative Law Judge’s decision, the Minnesota Department of Health and CCHC documents can be found at http://www.itsmydna.org

Citizens’ Council on Health Care supports freedom for patients and doctors, medical
innovation, and the right to a confidential patient-doctor relationship.

Private Medical Records Can Be Identified and Used Against Patients and Doctors.

PART 2  from CCHC….Minnesota  mailto:twila@cchconline.org

Private Medical Records Can Be Identified and Used Against Patients and Doctors.

The following is from the Senate version of SF 3099.

RE-IDENTIFICATION – Note that language about de-identification references the so-called federal HIPAA “privacy” rule (§164.514 – line 48.16). This allows the provider of the data to assign an identification “code” that allows the data to be re-identified, meaning that the data is NOT anonymous.

MEASURING DOCTORS – On lines 49.5 and 49.12, it is clear that the data will be used to “grade” doctors and clinics, reporting and measuring doctors by how many services they provide and how expensive they are.

RATIONING CARE – Physician payments will be attached to these report cards, potentially leading to limited services for patients in the near future.

    Sec. 20. [62U.10] PAYMENT RESTRUCTURING; PROVIDER INNOVATION
47.35TO IMPROVE COSTS AND QUALITY.
48.1    Subdivision 1. Development. (a) By January 15, 2009, the Health Care
48.2Transformation Commission shall report to the legislature recommendations for advancing
48.3an innovative payment system for the chronic conditions of coronary artery and heart
48.4disease, diabetes, asthma, chronic obstructive pulmonary disease, and depression.
48.5    (b) By January 15, 2010, the Health Care Transformation Commission shall report to
48.6the legislature additional changes necessary to accomplish comprehensive payment reform
48.7designed to support an innovative payment system to reduce costs and improve quality.
48.8    (c) By January 1, 2011, the Health Care Transformation Commission shall develop
48.9rules to implement a comprehensive payment system that encourages provider innovation
48.10to reduce costs and improve quality.
48.11    Subd. 2. Encounter data. (a) Beginning September 1, 2009, and every three months
48.12thereafter, all health plan companies and third-party administrators shall submit encounter
48.13data to the Health Care Transformation Commission. The data shall be submitted in a
48.14form and manner specified by the commission subject to the following requirements:
48.15    (1) the data must be de-identified data as described under the Code of Federal
48.16Regulations, title 45, section 164.514;
48.17    (2) the data for each encounter must include an identifier for the patient’s health care
48.18home if the patient has selected a health care home; and
48.19    (3) except for the identifier described in clause (2), the data must not include
48.20information that is not included in a health care claim or equivalent encounter information
48.21transaction that is required under section 62J.536.
48.22    (b) The commission shall only use the data submitted under paragraph (a) for the
48.23purpose of carrying out its responsibilities in designing and implementing a payment
48.24restructuring system. If the commission contracts with other organizations or entities to
48.25carry out any of its duties or responsibilities described in this chapter, the contract must
48.26require that the organization or entity maintain the data that it receives according to the
48.27provisions of this section.
48.28    (c) Data on providers collected under this subdivision are private data on individuals
48.29or nonpublic data, as defined in section 13.02. Notwithstanding the definition of summary
48.30data in section 13.02, subdivision 19, summary data prepared under this section may be
48.31derived from nonpublic data. The commission shall establish procedures and safeguards
48.32to protect the integrity and confidentiality of any data that it maintains.
48.33    (d) The commission shall not publish analyses or reports that identify, or could
48.34potentially identify, individual patients.
48.35    (e) The commission may publish analyses and reports that identify specific providers
48.36but only after the provider has been provided the opportunity by the commission to review
49.1the data and submit comments. The provider shall have 21 days to review and comment,
49.2after which time the commission may release the data along with any comments submitted
49.3by the provider.
49.4    Subd. 3. Utilization and health care costs. (a) The commission shall develop a
49.5method of calculating the relative utilization and health care costs of providers. The
49.6method must exclude the costs of catastrophic cases and must include risk adjustments
49.7to reflect differences in the demographics, health, and special needs of the providers’
49.8patient population. The risk adjustment must be developed in accordance with generally
49.9accepted risk adjustment methodologies.
49.10    (b) Beginning April 1, 2010, the commission shall disseminate information to
49.11providers on their utilization and cost in comparison to an appropriate peer group.
49.12    (c) The commission shall develop a system to index providers based on their
49.13total risk-adjusted resource use and quality of care, and separately for the conditions
49.14of coronary artery and heart disease, diabetes, asthma, chronic obstructive pulmonary
49.15disease, and depression. In developing this system, the commission shall consult and
49.16coordinate with health care providers, health plan companies, and organizations that work
49.17to improve health care quality in Minnesota.