Home

Medical Privacy At Risk – DEADLINE: MONDAY, March 15

1 Comment

Medical Privacy At Risk – DEADLINE: MONDAY, March 15
 

Please COMMENT NOW on federal plan.

SIMPLE – Just write a few lines expressing your feeling about government forcing your doctor through monetary incentives and financial penalties to put your medical records online and into the hands of government health surveillance officials would be great. If you say nothing, they can say you did not object.

DOUBLESPEAK – Officially, this is called the
Electronic Health Record Incentive Program.” In truth, it’s centralized government control of your doctors through the proposed National Health Information Network (NHIN).

TO COMMENT, check out the easy to understand info at www.forhealthfreedom.org. Then go to http://www.regulations.gov/  Enter RIN 0938–AP78 in the Keyword field and make a comment.

Deadline: Monday, March 15, 5:00 p.m. EDT
(4 days to go).


Public Comment Process:

 

A) Go to http://www.regulations.gov/

B) Enter RIN 0938–AP78 in the Keyword or ID field. Click Search buttom.
C) Click on the link with the following THREE pieces of information

1) Title: Medicare and medicaid Programs: Electronic Health Record Incentive Program;

2) ID: CMS-2009-0117-0002, and

3) ACTIONS: Submit a comment.

D) Enter your information as directed and write a comment (or attach a file with an already prepared comment). It can be short or long.

 

Minnesota Democrats and Republicans ready to seize medical files for rationed care

1 Comment

NOTE #1: There are 7 hours left of the Minnesota legislative session. HF1341—the health department’s bill to grab baby DNA and repeal genetic privacy—is on the Calendar in the House, but no word yet.

 


NOTE #2:  We will continue to deliver petitions against HF 1341 to the Governor until the legislature adjourns without passage of the bill (or similar language elsewhere)..or the Governor signs or vetoes the bill.

MN State Capitol at Sunset (TB)

CCHC Legislative News!

  • Your Data — Their Control
  • MN Meddling: New Law Expands Government Interference
  • Medicare:  Bad New Could Be Good News
  • ObamaCare Master Plan – More Data; Less Care


    Your Data, Their Control
    Republicans should take a lesson from Hong Kong’s Sir John Cowperthwaite. As former Financial Secretary, he refused to collect data to prevent the bureaucratic impulse toward central planning.  By refusing to collect economic statistics about Hong Kong during his tenure, he helped usher in the island’s unprecedented growth into an international financial center. “I did very little,” Sir John once said. “All I did was to try to prevent some of the things that might undo it.” That would be statistics.On July 1, 2009, medical records data from all Minnesotans will be shipped electronically by insurers to a data warehouse in Maine. No consent is required. The Minnesota Department of Health will own the data and use it to monitor and analyze physician treatment decisions and patients…and eventually ration care by statistical renderings of “cost-effectiveness.” The cost of the collection and analysis program is more than $5 million over the first three years. Health officials have no idea how to do what they want to do (see MDH Request for Information) but the likely impact will be punitive bureaucratic controls…and less access to care.Too many Republican leaders fail to understand that government data collection is tied to government control. Legislation at the state and federal level supported by Republican lawmakers and free market groups is chock full of new registries, repositories and electronic data sharing. Specific collections include patient outcomes, treatment patterns, and “quality” of health care. Report cards on doctor “performance,” and payment penalties will follow.

    Rationing of health care is enabled by such government data collection, analysis and payment schemes. Supporters of a  national interoperable online medical records system expect to use the system to nationalize health care—and the data to rationalize rationing of medical care. See “Evidence Based Medicine: Rationing Care; Hurting Patients, a paper written by CCHC’s president Twila Brase, and commissioned by the American Legislative Exchange Council, 12/2008.


    MN Meddling: New Law Expands Government Interference
    Minnesota Governor Tim Pawlenty may have line item vetoed some of the money in the health and human services bill (HF 1362), but a full-sized veto was warranted. The legislation extends to new heights government interference in health care. The list of troubling items in the bill (beyond the eligibility and spending increases) that we provided to legislators during the House floor debate include the following (with page and line #):•  Electronic prescribing mandate that will allow government tracking of your prescriptions and pharmacy choice. (62.4 )
    •  Electronic prescribing mandate allows pharmacies access to medical record information without your consent. (62.8 and 61.34)
    •  Nationalized medical records—by requiring conformance with federal sharing/reporting in Econ. Stimulus. (HITECH) (52.9)
    •  No payment for treating hospital-acquired conditions. Can hospitals and doctors prevent these various complications? (76.13)
    •  Government to establish performance thresholds for health care provider for “combined cost and quality.” (78.8)
    •  Health Services Policy Committee will track provider practice patterns. (93.19)
    •  DHS authorized to use “any other means available to verify family income” (to keep children on MinnesotaCare). (133.28)
    •  Collection of statistics on asthma hospital admissions. (151.6)
    •  Huge government-endorsed research project on patient “health care outcomes and treatment effectiveness.” (151.24)
    •  Substance abuse tracking system. (174.31)
    •  Data sharing/exchange on individuals authorized between 3 Departments (Health, Human Services, Mental Health). (198.1)


    medicare screenshotMedicare:  Bad News Could be Good News
    The future of Medicare is bleak—and that’s good news if you look at it the right way. The entitlement program’s expected demise is an opportunity to take strong steps now to free current and future senior citizens from the evolving life-threatening rationing strategies in play today and impending in the near future.Medicare will become insolvent in 2017, according to the latest Trustees report released May 12, 2009. In 2008, they reported insolvency by 2019. One year later, the date is 2017. Next year’s announced date of demise could be be 2015. Summary: “The Medicare Report shows that the HI Trust Fund could be brought into actuarial balance over the next 75 years by changes equivalent to an immediate 134 percent increase in the payroll tax (from a rate of 2.9 percent to 6.78 percent), or an immediate 53 percent reduction in program outlays, or some combination of the two.”Liberals will look at Medicare’s impending insolvency as rationale for a national health care system. Conservatives should look at the Medicare crisis as rationale for bringing freedom and free markets to the fastest growing segment of our population, people over the age of 65.  See CCHC paper: “Medicare: Need an Escape Plan, not a Rescue Plan”


    ObamaCare Master Plan – More Data; Less Care
    Peter Orszag is President Obama’s director of the White House Office of Management and Budget, and Obama’s chief health care strategist. He was also the person who put the $1.1 billion “comparative effectiveness research” (rationing) initiative and the national health data system into the Economic Stimulus bill. In 2007, as head of the Congressional Budget Office, he said in a presentation that electronic medical records not used for data-based controls on care will not save money. Thus, here is what he wrote in The Wall Street Journal on May 15, 2009:

“…How can we move toward a high-quality, lower-cost system? There are four key steps: 1) health information technology, because we can’t improve what we don’t measure; 2) more research into what works and what doesn’t, so doctors don’t recommend treatments that don’t improve health; 3) prevention and wellness, so that people do the things that keep them healthy and avoid costs associated with health risks such as smoking and obesity; and 4) changes in financial incentives for providers so that they are incentivized rather than penalized for delivering high-quality care. [CCHC NOTE: incentives for one thing tend to mean penalties for the other]

“Already, the administration has taken important steps in all four of these areas. In February, the president signed the American Recovery and Reinvestment Act, which is providing resources for electronic medical records, patient-centered health research, and prevention and wellness interventions so that we have the infrastructure in place to lower health spending in the long run….”

This is a plan for centralized control, based on a national health surveillance system. Orszag can’t take full credit for this idea. Hillary had it in her plan first, along with “quality” monitoring (Title V, Clinton Health Plan).


– CCHC –

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

BABY DNA ALERT – The Baby DNA Warehouse bill (SF 1478)Minnesota

Leave a comment

BABY DNA ALERT – The Baby DNA Warehouse bill (SF 1478) may be announced last minute for Monday (3:00 p.m.) or for Tuesday (3:00 p.m.). The author is having another bill heard by the committee on Monday, and could conceivably do the baby DNA bill at the same time. Need MORE petitions to Governor
Contact your Representatives. Vote could come anytime in the House. (rep.firstname.lastname@house.mn) Find your legislator on the right side of our home page: http://www.cchconline.org


Citizens Line Up to Speak

CCHC “What Happened” REPORT
– click here for more photos

Crowd Challenges Health Department’s Medical Records Grab

Yesterday, in a room filled with people who came to comment on the Health Department’s medical record grab—and their planned use of the data to centralize treatment decisions and restrict access to care—the Department stalled the conversation.

State officials used up the first hour with department presentations. Meanwhile KSTP-TV waited for the action to begin. And waited. And waited.

After I asked them to provide their definition of health care “quality” (which they refused to answer), they cut off all audience questions until the end.

After they used up the first hour with three presentations, they asked every person to limit their comments to five minutes.

Engaged Audience:
The audience, most of them wearing CCHC “My Medical Records are Mine” stickers, was very engaged once the presentations were over, occasionally shouting out vocal rebuffs of less-than-transparent answers by the Department. They also applauded various comments made by the public.

MDH may be hoping no one ever hears about the meeting. They chose not to record attendance (no sign-in sheets) or to tape record the public’s comments.

Today we publish the CCHC report of the meeting, with lots of photos, to make sure the public knows what actually happened.

Coming soon…a YouTube video of a very impassioned and noisy exchange between one woman and the Health Department officials on the constitutionality of government taking private data.

Twila Brase
President, CCHC
651-646-8935

Don’t take our medical records or send them to Maine

1 Comment

CCHC LOGO


MEDIA RELEASE
Wednesday, February 25, 2009
For Immediate Release


Minnesotans Tell State Health Officials:Don’t take our medical records or send them to Maine!

Saint Paul/Feb. 25, 2009 – In less than 48 hours, more than 500 people sent letters to the Minnesota Department of Health (MDH) asking for a public hearing on a plan to seize patient data without consent and transfer it to a data warehouse in the State of Maine where it will be accessible to MDH officials for tracking and analysis, according to Citizens’ Council on Health Care (CCHC).

A state health official contacted CCHC on Monday, confirming that 562 letters were received by the department during the last two days of the public comment period (Feb 9 – 10), each one of them asking for a public hearing.

“We call on the Minnesota Department of Health to hold a public hearing on this intrusive data collection rule. The Minnesota public is completely unaware that their medical records will soon be sent out of state and into the online hands of state government officials. The public has no idea that their data will be used to track them and to interfere in treatment decisions. They have no idea that they are about to lose all consent rights over their most private information,” charges Twila Brase, president of CCHC.

Detailed Patient Data
The “encounter data” initiative become law in the last days of the 2008 legislative session after it appeared in the negotiated health care reform bill that emerged from the Governor’s office. Patient data to be collected, tracked and analyzed include, but are not limited to:

  • demographics
  • diagnoses
  • treatments
  • doctor’s name and national provider identification numbers
  • insurance status
  • insurer
  • financial information
  • service, admission and discharge dates
  • injury codes
  • relationship codes
  • medications, including whether a refill and what date filled

 More…

– CCHC –

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

 

Hold a public hearing!

MN Government planning to STEAL your medical data…to RATION your care!

Leave a comment

Your action needed immediately!

DEADLINE – Friday, February 6, 2009.


MN Government planning to STEAL your medical data…to RATION your care!The Minnesota Department of Health (MDH) held a public meeting yesterday (1/29) to discuss their timetable for government warehousing and analysis of the medical records data of all Minnesotans for the purpose of centralizing medical decision-making…and limiting your access to care. (see quotes below)

List of your Medical/Insurance/Pharmacy Data that will be sent to Government

They plan to ramrod this plan through…and avoid all public input.

The 2008 health care reform bill negotiated by Governor Pawlenty and House and Senate leadership authorized “expedited rulemaking” therefore stripping citizens of their right to ask for a public hearing before a judge on this plan to seize the private patient data of every citizen.

Health Department Fails to Inform Citizens
Yesterday they had a public meeting, not a public hearing. The Department chose not to even advertise it to the general public. CCHC has found no press release. This is the ONLY public meeting they plan to have for the public to learn about their plans and provide input. Four members of the public, including CCHC, were in the room yesterday along with about 70 industry and government folks. The four individuals in the room asked many pointed questions about cost and privacy and research that clearly frustrated health department officials…and exposed their lack of knowledge on the cost of this intrusive operation. (see below)

Please Act Immediately!
The health department has set a February 6 deadline for hearing from you! CCHC has provided a list of the data that will be sent to the government. Please do the following:

image

  • TELL the MN Department of Health what you think of their plan to seize your medical records data and control your doctor’s decisions! Consider sending a carbon copy to the Star Tribune’s lead health science reporter (dhage@startribune.com) and to CCHC(info@cchconline.org)  Tell others to write a letter too. It can be 5 words long or 500.
  • TO SEND YOUR COMMENTS:

    Email:
    will.wilson@state.mn.us

    Mail:
    Minnesota Department of Health
    Division of Health Policy
    65 East Seventh Place, Suite 220
    St. Paul, MN 55164-0882
    Attn: Will Wilson

    Include your name, address, and phone number!

    TOPIC:  MDH Collection and Use of Patient “Encounter Data” (M.S. 62U.04)



    ALSO:


    Real Purpose of Data Collection
    Your medical records are being seized to monitor and control your doctors (see quotes); essentially, to build “scientific”data-based rationale for centralized decision-making…and health care rationing.

    Treatment Control Threatened – QUOTES 1/29/09 meeting
    The stated goals according to comments by today’s presenters included the following:

    • “[We’re] looking at care patterns of a provider”
    • “We want to know about the entire population the provider is serving”
    • “We want to get as complete a picture as possible of a provider’s population”
    • “[Use for] development and reporting of provider peer groups” based on “cost, quality, value, and efficiency”
    • “create a single standard [of “compliance reporting”] that the community agrees on.”
    • “to look at the quality of care provided…resources used to achieve quality…and price of resources used”
    • “Payers are required under statute to use that information” to steer patients toward higher quality, lower cost, more efficient providers [ie. providers that comply with MDH’s idea of “evidence-based medicine.”]
    • “We can look and see if that individual gets the appropriate treatment” [according to the ‘series of protocols’ they have for certain diseases]
    • “We need to count. We need to classify.”
    • “Gather all medical and pharmaceutical data and track members [patients] across plans”
    • Need pharmacy data to monitor “Treatment patterns…Resource consumption…Payment information”

    Command and Control
    Your medical records and insurance data will be used to create what they call, “provider peer groups.” CCHC prefers to call them “compliance report cards” on every doctor, clinic, and hospital. In 2002, MDH tried to get access to everyone’s private medical records through a proposed rule, but the public was outraged, hearings were held, it made front page news, and the proposed rule was withdrawn in 2003. In 2004, MDH tried to get the data through “best practices” legislation, but CCHC petitions forced the legislature to sunset the language in 2006. In 2008, in the final days of session the health care reform law gave them authority to get the data. By law, all insurers are now required to send your private data to MDH, which is using the Maine Health Information Center (MHIC) as their data warehouse contractor.

    Patient Privacy Gone
    Every time you see the doctor, the data will be sent to the Maine data warehouse. Every medication you take will be reported to Maine. Every diagnosis, every treatment will be cataloged. Every medical charge, every bill you pay will be reported. Your insurance company will have to regularly send a list of all their enrollees to Maine. The data will be released to MHIC under the loosest federal definition of “de-identified.” The name of every doctor and the encrypted name of every patient will be sent with every data submission. This “de-identification” process will not likely prevent re-identification of you if MDH wishes to do so.

    Clueless on Cost
    When asked about cost during the Q&A session, MDH officials did not know the following:

    • The cost of the 27 month contract with MHIC [they said they’d send it to CCHC]
    • The cost of the health department’s administration of the program [they said they’d send it]
    • Whether the data collection will save the state any money in health care spending
    • How much reporting will cost the entities required to report. They said they didn’t even try.

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

Leave a comment

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.

PROPOSED: Socialized Medicine, Gov’t Surveillance & DNA Grab! Minnesota

Leave a comment


Governor Pawlenty Supports Illegal Actions of MN Health Commissioner

CCHC held a press conference on December 10, 2008 challenging Governor Pawlenty to require health commissioner, Dr. Sanne Magnan, M.D., to follow the state’s genetic privacy law. WCCO-TV, KSTP-TV, and FOX-9 News gave the press conference great coverage, yet the Governor did not respond.

Instead, on January 9th, the Commissioner of the Minnesota Department of Health proposed to try again to eliminate parent consent requirements in the genetic privacy law by giving the Department access to baby DNA for at least two years. CCHC’s president, Twila Brase, was quoted in the St. Paul Pioneer Press saying, “This is the genetic profile of every child and the bloodline of every family…What they’re trying to say is, ‘For two years, it’s ours.'”

Last week, Twila Brase, president of CCHC, met TWICE with staff at the Governor’s Office. She met with the governor’s Director of Legislative and Cabinet Affairs, and his senior health care policy advisor. She made it clear that the Governor would have to publicly state that he is requiring the MN Department of Health to follow the law or we would feel free to assert three things as of January 21, 2009 (see below). No such proclamation has been made.

Thus, we regret to say, Governor Tim Pawlenty supports the following:

  • Violation of state law by the Minnesota Department of Health.
  • Government ownership and warehousing of newborn baby DNA.
  • Forcing newborn citizens and their families to become involuntary subjects of government genetic research.

To Contact Governor Pawlenty: 651-296-3391; 800-657-3717; tim.pawlenty@state.mn.us (voice mail is best)


Time to Twitter – Get CCHC Tweets!

CCHC has set up two sites on Twitter.

One is focused on genetic privacy and DNA ownership rights; the other is focused on the advance of socialized medicine. Within a hour of creating the NoSocializedMed twitter site, it had a follower…before CCHC even announced the site. Expect tweets straight from the halls of the legislature.

For those who do not know, “tweets” can only be 140 characters long. In other words, VERY SHORT!

U.S. House Republicans used Twitter to put pressure on Democrats during their energy sit-in during the 2008 August recess.

To see CCHC tweets – not more than two a day from each site – join Twitter and sign up to FOLLOW CCHC’s tweets. You can either come daily to the Twitter site to view the tweets…or be directly alerted whenever a new tweet is issued.

CCHC Twitter Sites:

http://twitter.com/itsmydna
http://twitter.com/noSocializedMed


Support CCHC’s Freedom-Focused Efforts Today

Your financial contributions will help CCHC’s efforts! Please donate $10 or $25 or $100 online today

Donations are tax-deductible!

CCHC has been approved as a 501(c)3 non-profit educational organization by the IRS.

Will Public Health “Tyranny” Rise in 2009?

1 Comment

Will Public Health “Tyranny” Rise in 2009?
Next year promises to challenge the health freedoms of all Americans.

As we move together toward January 1 and the challenges ahead, I want to take this opportunity to thank you for your ongoing support of Citizens’ Council on Health Care.

Together we have faced legislative giants and toppled them (eg. Minnesota Health Insurance Exchange…Baby DNA Warehousing). Your signature has graced petitions and emails and letters. Your calls have rung in the ears of the Governor, the President, Congress and/or the Minnesota legislature. It’s been a blessing to be a part of it all.

CCHC’s string of successes across the years tells the tale of your faithful and active support of CCHC’s efforts.

I’d like to say we won, once and for all. But I can’t. In 2009, we expect state and federal public health agencies to reach for more intrusive controls on patient care and individual lives. Here are a few pending examples:

  • Health care rationing will be pushed under the guise of “value,” “quality,” “equity,” and “evidence-based medicine” – as defined by corporate and government officials working together. (My paper published by ALEC refuting EMB)
  • As a sign of things to come, the New York Commissioner of Health is supporting an 18% “fat tax” on soda pop.
  • The Minnesota Department of Health is expected to try again to eliminate our consent rights for government warehousing of newborn blood and baby DNA. If you haven’t already, please sign the CCHC petition asking Governor Pawlenty to dismantle the Baby DNA warehouse.
  • Senator Ted Kennedy plans to establish Hillary’s national health data system to put all the private details in your medical records online and electronically accessible to public health officials. (“Wired for Health Care Quality Act”)
  • Mr. Kennedy will also attempt to create a new national entity appointed to use your private data to grade your doctors “performance,” likely in concert with the U.S. Department of Health and Human Services.
  • The Minnesota Department of Health appears ready to support Minnesota hospitals and others as they push for corporate ownership of the tissue, blood and DNA you leave behind in clinics, and laboratories and hospitals.
These plans, however, are just that. Plans.

Although they have some heavy duty backers, these plans are no reason to give up. As a wiser person than me has said, “All it takes for evil to triumph is for good people to do nothing.” It thrills me to know that you are one of the good people that acts. It remains a grand and noble challenge to protect the freedoms we were blessed to receive by birth.

Eternal vigilance is key. In 2009, CCHC will work to educate you on the issues so your vigilance is spot-on and timely.

I am reminded every day of how you are the backbone, the breastbone, the legs, the arms and often the ears and eyes of CCHC. We prize your active engagement with our efforts and your active support for the great and exhilarating cause of freedom. With your help we will be ready and able to meet the challenges of 2009. 

I know that these are difficult days financially.

As you consider the possibility of year-end giving, we would be grateful to be on your list. If you’ve been planning to give and haven’t yet…please Donate Now

Faithful friends are precious indeed. Thank you for all you do to support CCHC.

I look forward to working with you in 2009.

Yours in freedom,

Twila

 


Twila Brase, RN, PHN
President, CCHC
651-646-8935 

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

Citizens’ Council on Health Care
1954 University Ave. W., Ste. 8
St. Paul, MN 55104

Minnesota Department of Health Continues to Store Baby DNA without Required

Leave a comment

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.

PLEASE ACT – MN government wants to own your DNA!

Leave a comment

ACT NOW !                                            

TAKE OUR DNA SURVEY

UNDER ATTACK:  Your Parent, Patient, Privacy & DNA Property Rights!

While the MN Genetic Privacy law today requires informed written consent before government or others can collect, store, use or share YOUR genetic information….state government bureaucrats and special interests in a state genetic committee want to eliminate the consent requirement next year!


The Threat                

NEWBORN DNA: The MN Genetic Information Working Group has met for a year. During these meetings, the issue of newborn genetic testing…and storage and use of newborn DNA-filled blood spots…has become very contentious. (see quotes below)

BIG GOVERNMENT: Working group members from the Minnesota Department of Health (MDH) want government control and ownership of citizen DNA for “public health” purposes. Their recommendation seeks to undo the informed written consent requirements of the 2006 genetic privacy law (MN Statutes 13.386).

• INVOLUNTARY RESEARCH: The lawyer representing Mayo Clinic in the working group wants all blood, tissue and body parts taken in the course of your medical care to be available without your consent for medical and genetic research by your clinic, hospital and laboratory.

OPPOSED TO GOVERNOR’S VETO: Mayo’s lawyer also stated during one of the meetings that Governor Pawlenty’s decision to veto the 2008 DNA warehouse bill should not have happened (Notice: Mayo has a contract with MDH to do genetic testing of all babies).


Your help is needed now!

The 2009 legislature will soon be asked to decide whether to protect or eliminate your consent rights, privacy rights, patient rights and DNA property rights.

A report from the MN Genetic Information Working Group will go to the 2009 legislature in December.

Twila Brase, CCHC’s president and an appointed member of the working group, has pressed for retaining informed written parent and patient consent requirements. She has said that government and private institutions must be required to obtain informed written consent for almost all collection, storage, use and dissemination of biological specimens (blood, tissue, fluids, organs, hair, etc). She has repeatedly told the working group:

  • Individuals need the right to protect themselves from having their genetic data used against them and their families.
  • No person should be forced to be an involuntary subject of medical and genetic research.
  • Genetic experts are already warning that there can be no guarantee of anonymity in research because of the proliferation of databases.
  • Even if DNA and genetic testing data could be anonymized, individuals should not be forced to participate in research they may find objectionable.

Today, the Mayo attorney told members of the working group that if they accept CCHC’s recommendations regarding research, Minnesota would become an “outlier.” Twila Brase disagreed, saying Minnesota would instead become a leader.

Help us protect your parent, patient, privacy and DNA property rights!

If you haven’t already done so…please take CCHC’s very brief DNA OWNERSHIP SURVEY today!

Please ask everyone you know to take the survey as well!

 

STATEMENTS HEARD AT TODAY’S MEETING OF THE   MN GENETIC INFORMATION WORKING GROUP:

“People have to be very careful in weighing the risk of discarding  specimens…If you limit the ability to test these spots or keep these spots, you’ll limit the ability to test for lethal conditions in the future.”

(Ruth Lynfield, MDH Epidemiologist, arguing for continued government retention of newborn blood taken from all babies at birth)

“Yes, that’s rightThat’s how it’s historically been done.”

(Lynfield, MDH, in response to a member’s question about whether newborn blood spots now retained by the state health department have already been used for research to develop additional newborn screening tests)

“Yes, perfectly healthy children’s blood spots were used.” (David Orren, MDH attorney, in response to a question about the Mayo Clinic’s research project on Wilson’s Disease using government-retained newborn blood spots – without parent consent or knowledge)

“Having a population-based [blood spot] repository is incredibly important.”

(Lynfield, MDH)

“Public health is such a broad purpose.”

(Orren, MDH, arguing against parent and patient written informed consent requirements for secondary uses of DNA, biological specimens, and genetic information retained by government)

CCHC ACTION ALERT info@cchconline.org

%d bloggers like this: