Newborn Screening Program

Notice of Privacy Practices

This notice describes how medical information about you may be used and disclosed and how you can get access to this information. Please review it carefully.

Effective December 2023

The Genetic Disease Screening Program (GDSP) is defined as a health care provider under the Health Insurance Portability and Accountability Act (HIPAA). HIPAA is a federal law that created rules to protect sensitive patient health information from being disclosed without a patient’s consent or knowledge. GDSP is covered under HIPAA and is required to distribute this Notice of Privacy Practice.

The California Newborn Screening (NBS) Program is under GDSP as part of the California Department of Public Health (CDPH). The collection and exchange of personal health information between covered providers for the purpose of treatment, payment, or health care operations with GDSP and its agents in connection with the NBS Program is permitted by HIPAA and required by state law without special authorization or business associate agreements. This notice describes how personal and medical information about you and your newborn may be used and disclosed and how you can get access to this information. Please review it carefully.

Department’s Legal Duty

GDSP and business associates providing services to GDSP are required by law to maintain the privacy of protected health information. Federal and state laws restrict the use, maintenance, and disclosure of personal information obtained by a state agency and require certain notices to individuals whose information is maintained. The law also requires us to let you know promptly if a breach occurred that may have compromised the privacy or security of your information.

State laws include the California Information Practices Act (Civil Code 1798 et seq.), Government Code Section 11015.5, and Health and Safety Code Section 124980. The federal law is the Health Insurance Portability and Accountability Act of 1996 (HIPAA), 42 USC 1320d-2(a)(2), and its regulations in Title 45 of the Code of Federal Regulations Section 160.100, et seq.

In compliance with these laws, you and those providing information are notified of the following: GDSP collects and uses personal and medical information as permitted under Health and Safety Code Sections 124980, 124977, 124991, 125000, and 125001, and according to procedures in State regulations (17 CCR §§ 6501, 6502.1, and 6504.6). This information is collected electronically and includes your name, address, testing results, and the medical care provided to you.

Testing is required by law (Health and Safety Code Section 125000) and regulations (17 CCR 6500 through 6510) and if the required information is not provided, serious illness or permanent injury for affected newborns could result. If you have religious objections to this testing, you may say “no” to the testing in writing and sign a form advising you that your hospital, doctor, and clinic staff are not responsible if your baby develops problems as a result of these disorders not being identified timely and treated upon detection.

Uses and Disclosure of Health Information

GDSP uses health information about you for screening, to provide health care services, to obtain payment for screening, for administrative purposes, and to evaluate the quality of care that you receive. The examples below show how we may use and share health information for these purposes.

For treatment: GDSP may use your protected health information to ensure it provides the proper testing and sends the results to the correct medical provider.

For payment: GDSP may use and disclose your protected health information in connection with payments for treatment and services that you have received.

For health care operations: GDSP may use and disclose protected health information for operational purposes, for example to evaluate the quality of the services you have received.

The information will not be sold. The law also allows or requires GDSP to use or give out information we have about you for the following reasons:

For research studies, that have been approved by an institutional review board and meet all federal and state privacy law requirements, such as research related to preventing disease.
For medical research without identification of the person from whom the information was obtained, unless you specifically request in writing that your information not be used, by writing to the address listed below.
To organizations or business associates which aid us in our operations, such as by collecting fees. If we provide them with information, we will make sure that they protect the privacy of information we share with them as required by federal and state law.
For public health activities such as assisting public health authorities or other persons to prevent or control disease or injury.
For health and safety purposes to prevent a serious threat to the health or safety of a person or the public.
To coroners if the information is about an individual who has died.
To a health oversight agency for oversight activities authorized by law, such as determining compliance with program standards.
For specialized government functions such as to a correctional institution having lawful custody of an individual if the correctional institution represents that such protected health information is necessary for the provision of health care to the individual.
To the armed forces if the individual is armed forces personnel or foreign military personnel for activities deemed necessary by appropriate military command authorities.
GDSP may have to use or disclose protected health information for national security purposes to authorized federal officials to conduct authorized intelligence, counterintelligence, and other national security activities.
To the Secretary of the Department of Health and Human Services for the purpose of investigating or determining GDSP’s compliance with the HIPAA Privacy Rule.

GDSP Written Permission

GDSP must have your written permission to use or give out personal and health information about you for any reason that is not described in this notice. You can revoke your authorization at any time, except if GDSP has already acted because of your permission, by contacting Division Chief, Genetic Disease Screening Program, 850 Marina Bay Parkway, F175, Richmond, CA 94804.

GDSP reserves the right to change the terms of this notice and to make the new notice provisions effective for all protected health information that it maintains.

You may request a copy of the current policies or obtain more information about our privacy practices, by contacting us at NBS@cdph.ca.gov, contacting the Division Chief at the address above, or consulting the Program website. You may also request a paper copy of this Notice by contacting the Division Chief at the address above. This notice can also be found on the website (https://www.cdph.ca.gov/Programs/CFH/DGDS/Pages/nbs/nbsnpp.aspx).

Individual Rights and Access to Information

You have the right to look at or receive a copy of your health information. If you request copies, we may charge you $0.10 (10 cents) for each page. You also have the right to receive a list of instances where we have disclosed health information about you for reasons other than screening, payment, or related administrative purposes.

If you believe that information in your record is incorrect or if important information is missing, you have the right to request that we correct the existing information or add the missing information.

You have the right to ask us to contact you at a different address, post office box or telephone number. We will accept reasonable requests.

You may request in writing that we restrict disclosure of your information for health care treatment, payment and administrative purposes, however we may not be able to comply with your request. If you pay in full for health procedures that would normally be billed to a health plan, we must agree to the request to not share with your health plan any of your information as it pertains to the procedure for which you paid.

Please note: GDSP does not have complete copies of your medical records. If you want to look at, get a copy of, or change your medical records, please contact your doctor, provider, or health plan.

Complaints

If you believe that we have not protected your privacy or have violated any of your rights and wish to file a complaint, please call or write the: CDPH Privacy Officer, Office of Legal Services, P.O. Box 997377, MS 0506, Sacramento, CA 95899-7377 (877) 421-9634; privacy@cdph.ca.gov.

You may also contact the United States Department of Health and Human Services, Attention: Regional Manager, Office for Civil Rights at 90 7th Street, Suite 4-100, San Francisco, CA 94103, telephone (800) 368-1019, or (800) 537-7697 TDD toll-free; ocrmail@hhs.gov or the U.S. Office of Civil Rights at 866-OCR-PRIV (866-627-7748) or 866-788-4989 TTY.

No Retaliation: GDSP will not take away your health care benefits or any other protected rights in any way if you choose to file a complaint or use any of the privacy rights in this Notice.

No Discrimination: GDSP does not discriminate on the basis of race, color, national origin, sex, age, or disability.

Department Contact

The information on this notice is maintained by GDSP. The Division Chief of the Genetic Disease Screening Program may be reached at: 850 Marina Bay Parkway, F175, Richmond, California, 94804 (866) 718-7915. The Division Chief is responsible for the system of records and shall, upon request, inform you about the location of your records and respond to any requests you may have about information in those records.

Americans with Disabilities Act (ADA)

Notice of Information and Access Statement Policy of Nondiscrimination on the Basis of Disability and Equal Employment Opportunity Statement. CDPH complies with all state and federal laws, which prohibit discrimination in employment and provide admission and access to its programs or activities.

The Deputy Director, Office of Civil Rights (OCR), CDPH has been designated to coordinate and carry out the department’s compliance with nondiscrimination requirements. Title II of the Americans with Disabilities Act (ADA) addresses nondiscrimination and access issues regarding disabilities. To obtain information concerning the CDPH EEO Policies or the provisions of the ADA and the rights provided, you may contact the CDPH Office of Compliance, Civil Rights Unit, at P.O. Box 997377, MS 0504, Sacramento, CA 95899-7377 or (916) 445-0938.

Upon request, this document will be made available in Braille, high contrast, large print, or electronic format. To obtain a copy in one of these alternate formats, call or write: Chief, California Prenatal Screening Program, 850 Marina Bay Pkwy, F 175, Mail Stop 8200, Richmond, CA 94804; Phone: (866) 718-7915. This notice is online.