CCHC Requests Documents from the Mayo Clinic and University of Minnesota:

Seeks policies and procedures related to Governor's biotechnology initiative in genetic research

(St Paul, Minnesota) - In preparation for Minnesota's 2004 legislative session in which Governor Tim Pawlenty's biotechnology initiative will be debated, Citizens' Council on Health Care sent letters today to the Mayo Clinic and the University of Minnesota Board of Regents requesting a copy of various policies and procedures related to genetic and medical research.

"During the 2004 session, we expect the Mayo-University Partnership to request more than $100 million from state taxpayers. Minnesota citizens have a right to know how their genetic data will be used, shared, and/or protected as a result of state funding," states the CCHC letter.

The Mayo-University Partnership in medical genomics and biotechnology will make use of the body tissues and body fluids left behind by Mayo patients since 1906, according to news reports. In addition, researchers may be given access to the 4 million computerized patient medical records in Mayo's database. Similar access may be given to the University's tissue repository and medical record system.

Documents Requested Include:

  • patient consent forms for genetic research
  • procedures researchers must follow to acquire access to patient data
  • list of patient data to be placed on patient/genetic databases
  • policies that address bioethical concerns of genetic research

"Patients who step into hospitals and clinics for medical care do not want or expect to be the unwilling subjects of genetic research. We want to be able to assure patients and citizens that informed consent is or will be written into the biotechnology initiative involving Mayo Clinic and the University of Minnesota," says Twila Brase, president of CCHC.

Language amended to the House bill last year by Rep. Dick Borrell (R-Waverly), when the initial funding was authorized, would have required the Partnership to report on their data and confidentiality policies. However, Brase says the language was stripped out in conference committee, and did not become part of the final biotechnology bill.

"Legislators need to know how the rights of their constituents will be impacted by this proposal. Respecting the rights of patients to authorize or deny use of their body parts for genetic testing and research is the very least citizens can expect for contributing their taxpayer dollars to the project," adds Brase.

Mayo/U Partnership: www.mayouminnesotapartnership.org
Governor's Bioscience Initiative: www.dted.state.mn.us/biosciCouncil.asp

 

Media Contact:

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