Minnesota DNA Biobank Poses Threat to Genetic Privacy Rights

***MEDIA STATEMENT***

For Immediate Release
April 10, 2013

CONTACT:
Karyn Price, Hamilton Strategies:  215.855.1184/610.584.1096 or kprice@hamiltonstrategies.com
Deborah Hamilton, Hamilton Strategies: 215.815.7716 / 610.584.1096 or DHamilton@Hamiltonstrategies.com

Minnesota DNA Biobank Poses Threat to Genetic Privacy Rights

STATEMENT by Twila Brase, President of the Citizens’ Council for Health Freedom:

 “The Minnesota legislature is proposing to create a biobank of genetic information including biological specimens and health data. The Minnesota Department of Health biobank would be exempt from the Minnesota Genetic Privacy Act, and its informed written consent requirement. Therefore they could collect, store, use, and disseminate genetic information without individual consent.

Speaking: Twila Brase, President CCHF. Participating: (from left) Rep. Cindy Pugh, Sen. Warren Limmer, Sen. Michelle Benson (hidden),

 Rep. Peggy Scott and Dr. Michele Goodwin (not shown).

HF 695 and the corresponding SF 745 double down on the exemption from informed consent regarding data collection and use. The proposed language has a specific exemption for the biobank in the current genetic privacy act, but it also specifies in the proposed biobank language that individual consent is not required.

This bill is the department’s response to the Minnesota Supreme Court ruling on newborn DNA and genetic test results. The court ruled the health department in violation of the genetic privacy law, and now the department realizes that they could be sued for other illegal collection, storage, use, and dissemination of other tissues and genetic information collected without specific authority.

The Department has testified that it conducts these activities without express legislative authority and is now seeking retroactive protection from further litigation, as well as prospective authority to store and use even more genetic information without individual consent for the broadest of purposes, including criminal investigations and monitoring the health of the public.

Furthermore, we at the Citizens’ Council for Health Freedom believe these bills are part of a clever chess game that will eventually lead to the undoing of the Minnesota Supreme Court decision on baby DNA, which now requires the department to get informed, written consent prior to storing, using or sharing baby DNA.

I appreciate Rep. Peggy Scott’s efforts to inform the public about the department’s attempt to claim the genetic information of individuals as their own, and University of Minnesota’s Dr. Michele Goodwin’s expertise, which she shared at today’s press conference, regarding bioethics, the law, Fourth Amendment protections, and the enduring importance of informed consent.”

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