MN House Adds Amendments to Protect Patient Consent and Patient Privacy

(St. Paul, Minnesota) - With testimony from Citizens' Council on Health Care, two amendments to protect the privacy and informed consent rights of patients were added to the House Omnibus Data Practices Bill this afternoon in the Civil Law Committee.

Both were offered by Rep. Mary Liz Holberg, chair of the Civil Law Committee. Legislators expressed no opposition and the voice vote appeared to be unanimous.

Adopted Amendments:

1) Informed patient consent for research conducted by the Minnesota Partnership for Biotechnology and Medical Genomics, a taxpayer-funded initiative supported by the Governor.

"Genetic research raises many concerns. Current federal rules and Minnesota state law contain loopholes that allow research without patient consent. We wanted to be sure that genetic research funded by state taxpayers guarantees the right of informed patient consent and the right to refuse to participate," says Brase.

"When they enter the hospitals, patients shouldn't have to worry about becoming guinea pigs for somebody's research project. Patients should be able to rest easy, knowing that their genetic profiles and discarded body parts are not up for grabs." Brase adds.

2) Informed parent consent for disclosure of children's medical records to the health department and placement of children's health data onto a birth defects registry.

"We're pleased that legislators support the right of parents to protect their children from surveillance by the health department. Parents must be allowed to keep their children out of state databases," says Twila Brase, president of CCHC.

Media Contact:

Twila Brase, President
Phone: 651-646-8935 (office)
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