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Critic of screening program says real issue is 'control of your life'
From her office above a liquor store on University Avenue, Twila Brase issues a steady stream of press releases with arresting titles:
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From her office above a liquor store on University Avenue, Twila Brase issues a steady stream of press releases with arresting titles:
"National Children's Study Exploits Children; Threatens American Freedom and Industry."Governor Pawlenty Failing to Act on Baby DNA Illegally Obtained."
Her opponents call her an extremist in Minnesota's privacy debates. Brase says she simply spots the potential for abuses before they happen.
She got the ear of enough legislators to help sink two bills that insurers and the Minnesota Department of Health argued would have improved public health systems. One would have given insurers access to each others claims data. The other would have let the Health Department set medical practice guidelines.
"Privacy is not about privacy per se," said Brase, 49. "It's about control, personal control of your life and your medical data."
A former emergency room and school nurse, Brase founded the Citizens' Council on Health Care (CCHC) in 1995 in reaction to the Clinton administration's effort at health reform.
Her clout belies her tiny budget: In 2006, CCHC received just over $82,000 from supporters.
"I don't want anyone to think she's a privacy advocate and we're big business or government," said David Orren, chief legal counsel at the Health Department and a frequent sparring partner. "We are privacy advocates."
Kathy Stagni, co-chair of the state's Newborn Screening Advisory Committee, is more direct: "She's a thorn in my side."
Now Brase has a seat on the Minnesota Genetic Information Work Group, set up to advise the Legislature on collecting and using genetic data.
At the first meeting this fall, she nodded as an official cited the 1997 science fiction movie "Gattaca," which depicts a world of designer babies where those with physical flaws form a new underclass.
Chen May Yee • mychen@startribune.com
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