Privacy Policies

What should I know about the Newborn Screening Program's privacy practices?

The Department of Health is required by law to protect the privacy of newborns and their families and assure that all specimen/ information forms submitted for screening are protected from inappropriate use or access. Specific requirements are described in Section 246-650-050 WAC.

Newborn screening specimen forms are kept in secured storage for 21 years in accordance with Chapter 70.41.190 RCW. After that time, specimens are destroyed. The Department of Health will destroy a specimen prior to 21 years upon receiving a Specimen Destruction Request form (docx) from a parent or guardian (or patient who is over the age of eighteen years) if all required testing has been performed and if the patient's screening/clinical status related to these tests is not in question.

Access to newborn screening specimens is restricted to Department of Health personnel and approved individuals who agree to strict confidentiality requirements. Written parental consent is required for federally funded research or any research involving identifiable information. Any release of specimens or other information must comply with the State's Uniform Health Information Act (Chapter 70.02 RCW) and the privacy and security provisions of WAC Chapter 246-650 Newborn Screening.

Department of Health is a Hybrid Entity under the Health Insurance Portability and Accountability Act (HIPPA) regulations. More information on HIPAA requirements can be found by clicking on the HIPAA link, above.

Additional privacy information is available Genetic Information Nondiscrimination Act of 2008.

If the information contained on this page does not answer all of your questions or you would like more information, please email us with your specific question.