Monday, January 12, 2009

Minnesota Department of Health , The Minnesota Partnership for Biotechnology & Genomics, et al v. All of us.

The Minnesota Department of Health has provided some more, albeit incomplete, responses to my data practices request made pursuant to Minnesota Statutes.

My summary of correspondence with the Department of Health up until mid-December or so is adequately summarized in the video of me speaking at the Citizens Council on Heath Care Press Conference posted previously on this blog.

The fundamental question of my work on this story is who is pushing for, paying for, and benefiting from this DNA collection (there is more than one answer to this, and many other questions) and what is it all about. First I sent this letter, and then this letter, then followed again by this letter, the response to which I received this letter from the Data Practices Act Coordinator at Minnesota Department of Health.

Finally I received a letter from the Commissioner of Health herself, Dr. Sanne Magnan, (after the press conference) in which she asserts that the Minnesota Department of Health "withheld certain documents pursuant to Minnesota Statute section 13.605." In this letter, Dr. Magnan, Commissioner of the Minnesota Department of Health, further asserts: "The conclusion of the 2008 legislative session has no impact on the statutory classification of the documents as not public." This assertion by the Commissioner of Health belies the plain text of Minnesota Statute Section 13.605, which states in relevant part as follows:

"(b) Classifications. Legislative and budget proposals, including preliminary drafts, that are created, collected, or maintained by the state administration are protected nonpublic data. After the budget is presented to the legislature by the state administration, supporting data, including agency requests, are public data. Supporting data do not include preliminary drafts. The state administration may disclose any of the data within the state administration and to the public at any time if disclosure would aid the administration in considering and preparing its proposals."

The legislative session is over, and the Administration does not need to provide preliminary drafts, but it does need to produce supporting data, including agency requests. In seeming contravention of this alleged privilege, I actually was provided drafts of some legislation from the Department of Health, which makes this privilege assertion even more intriguing and perplexing. What brings this assertion from perplexing to hilarious is MDH notes on page 8 of this document I received, in which "NO" is handwritten, ostensibly by a MDH staffer, next to this typed document dated April 30, 2008:

"Notification of Parental Rights...Subd. 4 (b)..'The form must be made in duplicate, and contain a space for the parent or legal guardian to acknowledge receipt of the form by providing their signature. The parent or legal guardian must sign the form prior to collection of the infant's blood sample. The duplicate copy of the form must be provided to the parent or legal guardian, and the original must be placed in the infant's medical record."

Why is the Minnesota Department of Health being so secretive and working so hard for legislation that so invades our privacy - the roadmap to our very being?

The Minnesota Department of Health has a contract with the Mayo Clinic for newborn bloodspot screening using Tandem Mass Spectrometry. However, there is more to the contract than this, including this seemingly self-contradictory provision on page 3:

"2.11 Any request to use unidentified specimens or data for purposes other than those listed in section 2.8 [editor's note, 2.8 is entitled" "Quality Control and Assurance"] requires the written authorization of Contractor's Institutional Review Board, The State's Authorized Representative amd MDH's Institutional Review Board, and any other individual consents as required by law. Requests must specify, at a minimum, how the contractor will unidentify specimens [emphasis added] or data and how Contractor will comply with the parent's wishes for the destruction of the specimens or data. No identifiable specimens or data may be used for research without the written authorization of the State's Authorized Representative, the Institutional Review Boards of MDH and Contractor and the written consent of the subject's parent or legal guardian."

As a lawyer, I find this language confusing and contradictory. On the face of the text, it appears that dissemination of infant DNA data is an entirely open process. However, we still do not possess any details of what these studies are, or any of all of the alleged authorizations that are required for them to go forward pursuant to MDH's contract with Mayo Clinic. If there is nothing to hide, as Section 2.11 of the contract with Mayo clinic appears to show, then why do I not yet have any information about studies conducted by the Mayo Clinic, and only have this evasive letter from the Commissioner of Health?

I also learned from this letter from the Mayo Clinic about the Minnesota Partnership for Biotechnology and Medical Genomics, comprising of the University of Minnesota and the Mayo Clinic. In this tight economy, this organization brags on its website that it just recruited people to work for it. In a State with a $5 Billion plus deficit, it seems odd that this program is yet another one increasing in size. It is also particularly intrusive into our private lives. Even if the Government were to be trusted completely, it would be hard to justify such an intrusion into our very being and an extraction of wealth from us for the privilege of being invaded. As citizens, we need to see all documents related to the release of or use of Minnesota's children's DNA.

If you want to review nearly all of the documents (I didn't have time for a few, but this is 95%), please go to for a raw listing of all of them.

Please stay tuned to this blog, and support Twila Brase and the Citizens Council on Heath Care in any way you can, whether it be a modest contribution or volunteering of your time in whatever way suits you.