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BABY DNA ALERT:
Update 3/13/09
The hearing on SF1478 has been confirmed to be at the following time and place:
Senate Committee on Health, Housing and Family SecurityChair: Sen. John Marty (D-Roseville)
5:30 p.m. Room 15 Capitol
S.F. 1478-Sen. Linda Scheid: Newborn screening program provisions modifications.
Testify by email or Mail
Summary of Concerns
In short, the bills (SF 1478 and HF 1341) allows the Health Department to take, use, store and share baby DNA without a parent signature. The bills eliminate genetic privacy rights, informed written parent consent rights, and legal redress rights for illegal actions by the Health Department. The state's largest genetic testing program would no longer have to comply with the State's genetic privacy law.
Email your letter to the committee chair (see below) by Monday morning. Reference the bill number (see below). Include your name, and at least the name of your town. The letter does not have to be long. Just speak your mind. A few lines will do!
Send your email to Committee Chair Senator John Marty's committee administrator (laura.blubaugh@senate.mn) for SF 1478, authored by Sen. Scheid.
Send your email to Committee Chair Rep. Paul Thissen's committee administrator (Kate.Perushek@house.mn) for HF 1341, authored by Rep. Thissen.
Monday Hearing at Minnesota Legislature???
We've just learned that the Minnesota Senate is expected to hear the Baby DNA Warehouse bill on Monday, March 16, 2009. It may be an evening hearing (5:30 p.m.). This has yet to be confirmed. The formal Senate email announcement about Monday's committee hearings may not be made until tomorrow (Friday) evening... when the public is in the weekend mode!
We need testifiers...and we need people in the audience to just be a visual force in the room. If you have a baby, great!
Please let me know by email or phone (651-646-8935) if you can testify...or if you can be a powerful force in the hearing room. I'm happy to help you with testimony if you wish. They'll probably only allow 2-3 minutes for each testifier. A few details regarding the bill (SF 1478)...and our list of concerns...can be found below.
Bottomline?? Page 1, lines 21 - 24 of SF 1478 is the Department's sole goal for this legislation. They plan to exempt the State's newborn genetic testing program's currently illegal collection, storage, use, and dissemination activities from the state genetic privacy law's written informed consent requirements. They plan to eliminate the parent's or individual's right to sue for illegal activities related to government taking and use of newborn baby blood and DNA.
The rest of the bill is a red herring meant to draw your attention away from page 1, lines 21 - 24.
If you got this email, you'll get another email with the final hearing details.
Let me know if you want to speak up in voice or in presence!
Twila Brase
President
Citizens' Council on Health Care
651-646-8935St Paul Pioneer Press coverage of the parent's lawsuit filed yesterday
News Flash:Rep. Steve Gottwalt (R-St. Cloud) has removed himself as co-author of baby DNA warehousing bill, HF1341. Rep. Paul Thissen (D-Mpls) is the author. Rep.
Jim Abeler (R-Anoka) and Rep. Phyllis Kahn (D-Mpls) remain co-authors.
Senate Authors
Senate author of the 2006 "Parent's Right to Say No" Act.
CCHC's one-page list of concerns about the bill.
In short, Senate File 1478:
Eliminates the legal right of parents to sue the Department under the Government Data Practices Act (Chapter 13) for violations of the law. Eliminates genetic privacy rights for all newborn citizens since the department began storing data (Baby DNA - July 1, 1997; genetic test result - July 1, 1986) and including the parents of these children (same bloodline)
Eliminates informed written consent requirements for collection, storage, use and dissemination
Enables government ownership of baby DNA, unless parents in the midst of labor, delivery and the first 24-48 hours of birth know they have the right to object...or unless they are fully informed by and understand the information they receive regarding right to object.
Does not destroy the current nearly 12-year old baby DNA warehouse.
- For more information visit Citizens Council on Health Care
- Full text of SF1478
- Related information regarding HF1341