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Guidelines to Opt-out

Although the usage of dried blood spot specimens is highly controlled and confidential, some parents/legal guardians still wish to have their child’s specimen(s) excluded from use for anything beyond the routine mandated screening.

To have your child’s specimen(s) destroyed or simply excluded from research use, please fill out this form indicating your wishes. 

Please include the Laboratory ID Number from your pink copy, if available.

Please submit your form by FAX or mail it to the Program Director using the address provided on the form. If you prefer to e-mail the form, it must be sent as a PDF that contains the required signatures. A simple e-mail request is unacceptable.

Your request will apply to the baby’s initial specimen, as well as any necessary repeat specimens that were submitted. 

The Program will not return specimens to parents/legal guardians. These specimens, once destroyed, will also not be available in the future should the need for further clinical or identification testing arise.

If you choose to have any residual specimens excluded from use for research purposes, but not destroyed, it will be removed from general storage and maintained in separate storage up to 27 years. The specimen(s) will not be used for general research. However, if you choose to participate in a particular project that requires your consent, or if there is a medical request as described above, the specimen(s) may be used. In either of these cases, your baby’s specimen(s) will not be used without your written consent.

If you have requested to have your baby’s residual specimen(s) destroyed, the specimen(s) will be separated from general storage and disposed of no sooner than 8 weeks after birth. This time lag is necessary to ensure that all necessary screening is complete before the sample is destroyed.

You will be notified in writing by the Program Director that your request has been received and that your baby’s specimen(s) has either been separated from general storage or destroyed, according to your request.