Birth Defects Database: CCHC to testify against creating a state database of the disabled

HEARING TODAY: CCHC to testify against creating database of the disabled

(St. Paul, Minnesota) - Tracking, monitoring, and profiling people with birth defects and developmental disabilities violates their rights, says Citizens' Council on Health Care (CCHC).

Senator Sheila Kiscaden (I-Rochester) is bringing a birth defects information system proposal to the Senate Health and Family Security Committee for debate and deliberation this evening.

Senate File 2242 :

  • establishes a state database of people with birth defects/disabilities
  • does not define "birth defect"
  • requires clinics, hospitals, and laboratories to disclose patient data
  • does not require parent or patient consent
  • requires other data repositories to share patient data
  • allows state health officials to release patient data to other states
  • allows Minnesota to receive patient data from other states

The bill allows parents to opt out, but doesn't require them to be informed, or to be given easy access to the opt-out process. Furthermore, as Twila Brase, president of CCHC says,

"Opt-out puts the burden on citizens to find out, to get out and to stay out, all in the midst of a difficult and trying experience. Plus, opt-out means you're only out until someone puts you back in."

Because the state health department would be authorized to both share and receive information with other states, the whereabouts and medical details of disabled children, parent of disabled children, and disabled adults (grown up children) can be followed across state lines.

"No matter what you go, if you are have a birth defect or disability, the government will find you," says Brase.

"We think the legislature should ask themselves the following question: 'What is it about birth defects and disabilities that takes away the right to be free?'" she adds.

Media Contact:

Twila Brase, President and Co-founder
Office: 651-646-8935