Patient Privacy

Questions to Ask - Mayo/Univ. of Minn. Genetic Research Plan

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.

What Consent? - MN's Medical & Genetic Research Law

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.

CCHC Opposes Proposed "National Health Information Network"

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.

EBM: How Technocrats are Taking Over the Practice of Medicine

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).

"Big Government" in Your Medicine Cabinet?!

Health department's legal authority to collect private medical data remains intact

Although the Minnesota Department of Health has today withdrawn the proposed rule to collect patient medical record data without patient consent, the public should not be relieved.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.

Minnesota Plans to Create State Health Database

Although the proposed department RULE was withdrawn in 2003 due to public outcry, the state LAW (M.S. 62J.301 and 62J.321) was not repealed.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.

EMPLOYER GROUPS AND RESEARCHERS support data collection: read their testimony

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))

Times Testimony on Minnesota Department of Health Rule 4653 House Health and Human Services Policy Committee Chair: Rep. Lynda Boudreau

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.

IMMEDIATE AND ONGOING OPPORTUNITIES FOR PUBLIC RESPONSE: Minnesota's Health Data Collection Rule and Law

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.