Frequently Asked Questions (FAQs):
1. How will TeleKidSeq keep my and my child’s information secure?
Your privacy and the security of your information are very important to us. To protect your privacy, we will remove any personal information from samples and replace them with a study ID number. The medical information we collect from you, including genomic test results, will be made available to your doctors at Mount Sinai, Montefiore, or in private practice.
All paper documents and records used in this study will be secured at our facilities and accessed only by our authorized study personnel. Electronic data will be stored on a password- protected server protected by our institutional firewalls. All documents, records, and electronic data will be accessible only to those with approved access based on their required roles.
2. How can TeleKidSeq benefit my child?
What we learn from this study may or may not find the cause of your child’s health problems. However, it may help your health care provider care for your child. Even if we do not find a genetic explanation for your child’s health problems, what we learn could benefit you and others in the future, by helping us understanding more about these medical problems.
3. Will having genomic testing affect my or my child’s eligibility to receive health insurance?
The federal law, the Genetic Information and Nondiscrimination Act (GINA), protects individuals from discrimination based on their genetic information. This law makes it illegal for employers or health insurers to discriminate against people because of their genetic makeup. It is also illegal for a health insurance company or employer to request or require genetic information from you or your family members.
If you have any questions about insurance and your right to protection from genetic discrimination, please contact us or a local genetic counselor. You can also find information on the web pages below:
English Resource: http://www.ginahelp.org/GINAhelp.pdf
Spanish Resource: https://www.eeoc.gov/spanish/types/genetic.html
4. What will TeleKidSeq do with my child’s and my blood samples?
When TeleKidSeq receives blood or saliva samples from you and your child, these samples will be sent to the New York Genome Center (NYGC) Laboratory for genomic testing. NYGC is Clinical Laboratory Improvement Amendments (CLIA) certified, accredited by the College of American Pathologists and approved by New York State to perform whole genome sequencing for the purposes of this study. These approvals mean that our labs are regulated at the state- and federal-level to ensure that you and your child’s blood samples to result, meets standards for quality.
6. Can my other children be enrolled in this study?
Unfortunately, we can only offer genomic testing to your child referred to us through your doctor.
7. Is this similar to the ancestry tests (Ancestry.com or 23andMe) I can order online?
No, the testing offered in TeleKidSeq is being done to try to find a diagnosis for your child’s health problems. In addition, it will not provide any information about your ancestry.