Links and Quotes • May 2010 • Storing and Using Newborn DNA—Without Parent Consent

Key Information

HIPAA "privacy" law does not require consent for hospitals or health plans to share private medical record data with government agencies

The federal HIPAA law allows state legislatures to write laws that are stronger, more protective of privacy, than HIPAA.

Newborn Genetic Testing – Year-by-Year History

Language: “It is the duty of (1) the administrative officer or other person in charge of each institution caring for infants 28 days or less of age and (2) the person required in pursuance of the provisions of Minnesota Statutes, Section 144.159, to register the birth of a child, to cause to have administered to every such infant or child in its or his care tests for phenylketonuria and other inborn errors of metabolism causing mental retardation in accordance with rules or regulations prescribed by the state board of health. Testing and the recording and reporting of the results of such tests shall be performed at such times and in such manner as may be prescribed by the state board of health. The provisions of this section shall not apply to any infant whose parents object thereto on the grounds that such tests and treatment conflict with their religious tenets and practices.”

Newborn Seized from Parents in Nebraska after Parents Refuse Newborn Genetic Testing - Associated Press

OMAHA — A nearly 7-week-old baby is home after sheriff’s deputies seized him from his parents so doctors could perform a mandatory blood test that the boy’s parents object to on religious grounds.

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Although the proposed department RULE was withdrawn in 2003 due to public outcry, the state LAW (M.S. 62J.301 and 62J.321) was not repealed.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