GDSP is required by law to maintain the privacy of protected health information. The 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: CDPH collects and uses personal and medical information as permitted under Health and Safety Code Sections 124977, 124980, 125000, 125002,125050, 125055, and 123055, and according to procedures in State regulations (17 CCR §§ 6527, 6529, 6531 and 6532). The information CDPH collects is used to estimate the risk of serious birth defects in the pregnancy and provide diagnostic testing for pregnant women. If personal information is not provided, problems could result such as not detecting an affected baby, falsely reporting increased risk causing unnecessary invasive testing, or not being able to bill properly for the services provided. This information is collected electronically and includes your name, address, testing results, and medical care given to you.

CDPH uses health information about you for screening, to provide health care services, to obtain payment for screening and administrative purposes, and to evaluate the quality of care that you receive. The law also allows CDPH 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 that help us in our operations, such as by collecting fees. lf 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.

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.

CDPH 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 calling the numbers listed on the next page or consulting the PNS Program web page. You may also request a paper copy of this Notice.

You have the right to look at or receive a copy of your health information. If you request copies, we will 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, ou 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 all requests.

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 to the: Privacy Officer, CDPH, 1415 L Street, Suite 500, Sacramento, CA 95814, (877) 421-9634. CDPH cannot 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.

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, or the U.S. Office of Civil Rights at 866-OCR-PRIV (866-627-7748) or 866-788-4989 TTY.

The information in 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.

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.