States Utah

Opt-Out:

All babies born in Utah are required by law to receive Newborn Screening except in the case where parents object on the grounds that they are members of a specified, well-recognized religious organization whose teachings are contrary to the tests required by this section. If this applies, the objection to newborn screening form or a similar form containing the same information, which has been developed by your child’s birth institution, needs to be completed and sent to:

Utah Department of Health & Human Services
Newborn Screening Program
PO Box 144710
Salt Lake City, UT 84114-4710
Fax: 801-536-0966

Support for families:

One of the concerns some families may have when they find out their child has a condition detected through newborn screening is the increased cost of health care for their loved one. Fortunately, Utah has various laws and programs which strive to make quality health care affordable for those with a condition.

For those with private accident and health insurance, Utah requires the plans to cover dietary products, such as medical formulas needed by some with an inborn metabolic condition, as a major medical benefit. There are established minimum standards of coverage for dietary products, including formulas and low protein modified foods, used for the treatment of inborn errors of amino acid or urea cycle metabolism. This coverage is provided at levels consistent with the major medical benefits provided under a disability insurance policy, which means some cost-sharing mechanism might be required such as a deductible or co-pay for the formula.

The Utah Birth Defect Network is available to provide information about specific birth defects to families and health care providers. Referrals for medical and financial information are available. Specific services for families of affected children from birth to three years of age are provided by the Utah Baby Watch Early Intervention Program, located within the Office of Early Childhood, Division of Family Health, Utah Department of Health and Human Services. Services include child health assessment, service coordination among providers and programs and agencies. Information on these services is available on the Utah Baby Watch website or by calling 801-273-2900 or 866-818-7096.

Storage and Use of Dried Blood Spots:

After the newborn screening tests are completed, there will remain some dried blood on your child’s card which was submitted to the lab. These are called “residual dried blood spots.” The specimen/information form submitted to the department becomes the property of the state of Utah, upon receipt by the Utah State Public Health Laboratory. The residual dried blood spot card is securely stored as it still has beneficial public health uses, such as on-going quality assurance/quality control of the tests for these and other health disorders as well as research that seeks more effective ways to test and treat serious childhood diseases.

The department will protect the privacy of the newborns and their families and assure that all specimen/information forms submitted for screening are protected from inappropriate use or access. The blood spot sample is retained at the state public health laboratory for a period of time (minimum of 90 days) to assure accurate screening and for approved uses. Storage and release of blood spot card specimen or information is governed under Utah law and other federal and state requirements. For any use of the residual dried blood spot, identifying information is removed from the blood spot card and cannot be connected to the identity of the child. Identifying information linking a child to a particular blood spot card is not allowed without advance consent of the child’s parent(s), managing conservator or legal guardian(s) unless otherwise provided by law. The information form, which is kept separately from the residual dried blood spot, will be retained until the child is 22 years old. This form includes all demographic data, screen test results, confirmatory test results, nursing notes and other information that documents the child’s condition and status. After the 22 years, all records will be destroyed.

If you decide you do not want your child’s blood spot sample to be used for any other purpose after the newborn screening test and all necessary diagnostic testing has been completed, you may request the destruction of the blood spot sample. Completely fill out and submit the form, along with 1) a copy of the child’s birth certificate and 2) a copy of your driver’s license, state-issued identification card or passport to the Newborn Screening Program, PO Box 144710, Salt Lake City UT 84114-4710. Or contact us at 801.584.8256 to send you a form.

If you have any questions regarding any of the above information, please contact the Utah Newborn Screening Program at 801.584.8256.

To see a copy of the blood spot card used in Utah click here.