Storage of samples and protection of privacy
Personal information about the parents and the child (e.g., name, date, place of birth) and blood and urine samples collected during screening activities will be stored in a confidential manner by the hospital centres responsible for testing.
"Normal" samples will be destroyed after two years, in the case of blood samples, and after five years, in the case of urine samples. All "abnormal" samples will be stored long term.
Information may be shared in a confidential manner between those responsible for screening and health professionals solely in order to:
- carry out further testing for the child’s benefit;
- provide the child with the care they need;
- ensure the evaluation, quality assurance and continuous improvement of screening services.