May I refuse to participate in one or both pilot studies?

Yes. You may refuse your baby's participation in either one or both of the pilot studies, for any reason. If you refuse, your baby will still have all the advantages of routine newborn screening.

How do I enroll or refuse to participate in optional screening?

After your baby is born, you will be asked whether you received a brochure or have seen this website with information about the pilot studies. Then, you will be asked whether you want your baby to be screened for the disorders in the two pilot programs.

Important!
You will be asked to give your response before your baby's specimen is sent to the screening lab*. Your answer will be indicated on the newborn screening collection form. When your answer is recorded on your baby's specimen collection form, you will be given a copy to keep for your records. A sample of the copy you will receive is shown by clicking here. (Note: you may be reading a non-English translation of this web site. However, the actual copy for your records would be in English.)