Patient Privacy
Policy Briefs
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March 01, 2005
People may not understand…that tissue samples they provide may be used for genetic research…They may believe that samples will be discarded after testing, although the law often requires that samples be retained. When samples are obtained as part of medical care, patients may not be told about the possibility that these samples will be stored and used for research.
Policy Briefs
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February 01, 2005
Minnesota state law denies most consent rights for patients regarding use of their individually-identifiable medical records for medical research. UPDATE: Until the Minnesota Genetic Privacy Act passed in 2006, Minnesota law was silent on collection, storage use and dissemination of genetic information for genetic research. States are not preempted by federal law from passing stronger, more privacy-protecting laws.
Public Comments
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January 18, 2005
The HHS notice states, “Regardless of how it is developed, overseen or operated, there is a compelling public interest for a NHIN to exist.” This claim does not stand up to scrutiny. Nor is it supported by any documentation. There is no evidence that the public is asking for a national electronic medical records system that will facilitate the sharing and dissemination of their private medical records.
National Reports
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January 01, 2005
Looming on the visible horizon of American health care is new attempt to control the practice of medicine and limit—indeed ration—patient access to health care services. While doctors often refer to it as "cookbook medicine," this quickly advancing strategy is best known by the name "evidence-based medicine" (EBM).
Announcement
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November 22, 2004
Press Releases
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March 21, 2003
Although the Minnesota Department of Health has today withdrawn the proposed rule to collect patient medical record data without patient consent, the public should not be relieved. So says Citizens' Council on Health Care, the Minnesota health care policy organization who has long opposed this plan.
Medical Privacy
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March 20, 2003
Although the proposed department RULE was withdrawn in 2003 due to public outcry, the state LAW (M.S. 62J.301 and 62J.321) was not repealed. By law, the health department can still gather private medical records data, including genetic data, without patient consent. No rule is required.
Testimony
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February 01, 2003
Partial Transcript
Minnesota House Health and Human Services Policy Committee
February 10, 2003
Chair: Representative Lynda Boudreau (R-Faribault)
House File 297 (Author: Rep. Bill Haas (R-Champlin))
Testimony
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January 22, 2003
Health officials kept the average citizen in the dark about their plan. Although the department sent out notices to various individuals and organizations, the department buried the rulemaking process and the proposed rule in its website where even I, who was looking specifically for it, couldn't find it until I searched under the word "encounter," a word most of the public wouldn't know. Second, the department gave the rule a less than descriptive title: Proposed Permanent Rules for Administrative Billing Data. This title does not indicate that a patient-tracking system was being set up. And finally, the department did not distribute a press release on their intentions, inviting the public to comment.
Medical Privacy
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November 01, 2002
CONTACT YOUR LEGISLATORS. The rule is based on a 10-year old state law. The Minnesota Legislature can choose to repeal or change the law that enabled the rule. Send or email a separate letter (or a copy of your previous letter to the judge or MDH) to your state Representative and Senator.