Privacy and Confidentiality

Newborn Screening Ontario (NSO) is administered by the Children’s Hospital of Eastern Ontario (CHEO) and funded by the Ontario Ministry of Health and Long-term Care. NSO is committed to providing the best possible screening for newborn babies across the province and to do this we need to collect and use a small blood sample from babies together with some information about them and their families. NSO is committed to keeping your information and your baby’s blood sample safe and confidential. We follow the rules set out in law about their collection and use. They can be used for health care, analysis, quality assurance, and research. NSO follows CHEO’s internal privacy policies and procedures, the relevant parts of which are summarized below.

Health information provided to NSO (including screening results) may be used for the following purposes:

• To provide care
  • Personal health information is used by care providers and trainees who are part of your child’s health care team.
• To teach
  • Your child’s information may be used to support our partnership with the University of Ottawa and other schools, while adequately protecting your privacy.
• To conduct research and compile statistics
  • Researchers may use your health information while working on a study approved by the CHEO Research Ethics Board.
  • Additionally, as a member of the Global Alliance for Genomics & Health, research performed using genetic analysis will adhere to the framework for responsible sharing of genomic and health-related data.
• To improve the care we provide by conducting quality improvement and risk management activities
• To obtain payment for your treatment

NSO may also use or disclose your personal health information for the following purposes, unless you tell us not to:

• Share your information, in whole or in part, with your health care providers outside CHEO who are involved in your care.
• Conduct patient satisfaction surveys: We care about our patients and want to hear from you about the quality of care and service you received. We use this information to help improve the care we will provide in the future.

You have the right to:

• Request access to your personal health information
• Request a correction to your personal information if it is incorrect
• Withdraw your consent for uses and disclosures indicated above by contacting us.

For more information about who may receive the results of a baby’s screening test, please visit our Screening Results FAQ page.

To learn about what happens to newborn screening samples when testing is finished, please visit our Storage and Secondary Use page.

If you have any questions or concerns about privacy or confidentiality, please do not hesitate to contact us.