Who would have access to my child’s information and samples?
Our highest priority is protecting the privacy of our patients. Only personnel authorized by the Director of Lab Operations will have direct access to secure storage facilities and samples. Only authorized personnel and approved researchers will have access to personal health information.
All records identifying participants will be kept private and confidential. Identifying information will only be released with the express written permission of the participants or their families or by approval of the Children’s Mercy research review board.
Children’s Mercy researchers and outside researchers may apply for access to patient samples and information under certain conditions.
- They must have an approved research protocol.
- This research can only be for purposes related to pediatric genetic disorders.
- Samples and information provided to researchers may or may not include information identifying the patient.
Data from Genomic Answers for Kids will not be sold.