GENETIC PRIVACY NOT ADDRESSED:

MN Bioscience Council Letter to Governor Fails to Address Genetic Privacy Concerns

(St. Paul, Minnesota) - Yesterday's letter from the Minnesota Bioscience Council to Governor Tim Pawlenty failed to address the genetic privacy and patient consent issues surrounding the new Minnesota Partnership for Biotechnology and Human Genomics, says St. Paul-based Citizens' Council on Health Care (CCHC).

"We have been asking the Department and the Bioscience Council since June to consider this issue and to give our organization an opportunity to address it before legislative recommendations were made. Thus far, we have been rebuffed," says Twila Brase, president of CCHC.

The letter from the Bioscience Council, which is chaired by Commissioner Matt Kramer of the Department of Employment and Economic Development, recommends that Minnesota taxpayers provide $40 million to the U/Mayo partnership for construction of a genomics building in Rochester, and $70 million for genomics and genetic research. There is no mention of patient consent or genetic privacy.

The U/Mayo Partnership will conduct research by using 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.

"Taxpayers are being ask to fund genetic research without sufficient consideration for patient consent and patient rights. Hospital and clinic patients should be assured that they will not become subjects of genetic research just because they happened to leave a blood specimen or a body part behind," says Brase.

Media Contact:

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