minnesota newborn screening program

Data Privacy

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Data Privacy
Information Security

Data Privacy

Newborn screening information is classified as private under state and federal law. The Minnesota Department of Health Newborn Screening Program firmly adheres to state and federal laws designed to protect individual privacy and health-related information.

The only people who have access to a child’s newborn screening information are:

  • newborn screening program staff who have completed data privacy training;
  • the patient/parents/legal guardian(s); and
  • the healthcare provider(s) caring for that child.

For anyone else to obtain an individual’s identifiable information, the patient/parent/legal guardian must sign a consent form allowing the release of such information.

MDH Data Practices Policy (PDF: 136KB/18 pages)

The MDH Newborn Screening Program is governed by and adheres to the following laws, statutes, or rules regarding individual privacy:

Minnesota Government Data Practices Act, Minnesota Statute, Chapter 13

Minnesota Statutes, Chapter 13 outlines requirements of Minnesota state agencies in the collection, storage, and release of data. The Minnesota Newborn Screening Program adheres to the language in Chapter 13, so as to ensure the protection and privacy of all individuals.

The Health Information Portability and Accountability Act (HIPAA)

This privacy rule governs the use and disclosure of protected health information. HIPAA applies to health plans, health facilities and health care providers. Section 164.512 of HIPAA permits disclosures of health information to MDH by medical providers for public health activities that are required by law and are performed for the purpose of preventing disease (such as newborn screening).

Electronic Code of Federal Regulations, Title 45

After the Bearder, et al., v State of Minnesota decision on November 16, 2011, the Department does not utilize any specimens beyond testing for the specific infant that the sample was submitted from. Prior to November 16, 2011 when the Department utilized specimens in research to benefit public health and the health of Minnesota infants, the Code described below was rigorously adhered to. The Minnesota Department of Health complies with Title 45, part 46 of the Code of Federal Regulations. Any department-sponsored research using newborn screening specimens must be reviewed and approved by an MDH Institutional Review Board (IRB). Institutional review boards are review bodies established to protect the welfare of individuals recruited to participate in research studies. Institutional review boards recognize the principles of respect for persons, beneficence, and justice as laid out in the Belmont Report. Any study being done in collaboration with another institution must be approved by IRBs of both MDH and the collaborating institution.

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Information Security

The Minnesota Department of Health takes many steps to safeguard the integrity of its telecommunications and computing infrastructure. Newborn screening information is stored in a database accessible only by authorized Public Health Laboratory personnel, who have completed data privacy training. Each authorized user must have a password which must be authenticated upon each log-in to the system. The host server for the data exists within an access-restricted, firewall-protected network internal to the Minnesota Department of Health.

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Updated Tuesday, 31-Jan-2012 11:56:54 CST