AB589 - Establishes requirements to protect the privacy of certain information and genetic material. (BDR 19-1241)

- 83rd Session (2025) EMERGENCY REQUEST of Speaker of the Assembly Assembly Bill No. 589–Assemblymember Yeager CHAPTER.......... AN ACT relating to privacy; prohibiting a state agency, a local government or a contractor or grantee of a state agency or local government from collecting or disclosing autism-related data under certain circumstances; requiring the Office of the Governor to biennially review compliance with those prohibitions; authorizing the establishment of advisory groups to evaluate and make recommendations concerning the implementation of those prohibitions; prohibiting the obtaining, retention, sale or transfer of certain genetic information or a DNA sample except in certain circumstances; prohibiting the disclosure of certain genetic information or related information except in certain circumstances; prohibiting certain genetic testing except in certain circumstances; creating a cause of action for certain unauthorized disclosures of genetic information and certain unauthorized genetic testing; providing penalties; and providing other matters properly relating thereto. Legislative Counsel’s Digest: Existing law establishes various programs to provide benefits and services to persons with autism spectrum disorders. (NRS 62B.700, 388.449, 391A.250- 391A.270, 422.27497, 427A.871-427A.8803, chapter 435 of NRS) Sections 2-9 of this bill establish protections for the privacy of autism-related data maintained by state agencies, local governments and contractors and grantees thereof. Sections 3- 5 define certain terms, and section 2 establishes the applicability of those definitions. Section 6 prohibits a state agency, local government or contractor or grantee thereof acting within the scope of the contract or grant from collecting autism-related data except for certain purposes relating to: (1) the provision of benefits or services to persons who have or are suspected of having autism spectrum disorders; and (2) compliance with, or ensuring compliance with, applicable law. Section 7 prohibits a state agency or local government from disclosing autism-related data to outside persons or entities except: (1) with the informed consent of the person to whom the autism-related data pertains or his or her legal guardian; (2) to comply with certain legal requirements; or (3) where necessary to provide services or supports to the person to whom the autism-related data pertains. Section 7 prohibits a contractor or grantee of a state agency or local government from disclosing autism-related data obtained from the state agency or local government or obtained within the scope of the contract or grant except in those authorized circumstances. Section 9 makes a conforming change to indicate that autism-related data in the possession of a state agency, local government or contractor or grantee thereof is not a public record. Section 8 requires the Office of the Governor to perform a biennial review of compliance by the Executive Department of State Government and the contractors and grantees thereof with the requirements of sections 6 and 7. Section 8 also authorizes the Director of the – 2 – - 83rd Session (2025) Department of Health and Human Services to appoint time-limited advisory groups to evaluate and provide recommendations concerning the implementation of sections 2-8. Except where the person to whom genetic information pertains or his or her legal guardian provides informed consent or in certain other circumstances, existing law makes it a misdemeanor to obtain, retain or disclose genetic information obtained from a genetic test conducted to determine the presence of certain abnormalities or deficiencies. (NRS 629.101-629.201) Section 14 of this bill broadens the information to which those provisions apply to include information obtained from any test to derive and interpret data related to the genetic characteristics of a person. Sections 16 and 17 of this bill additionally make it a misdemeanor to obtain or retain a DNA sample under circumstances where it is currently a misdemeanor to obtain or retain genetic information. Sections 18 and 20 of this bill make the unauthorized disclosure of the identity of a person who was the subject of a genetic test or of genetic information a category E felony. Section 18 additionally makes it a category E felony to intentionally submit the DNA sample of another person for a genetic test or perform or cause the performance of a genetic test on the DNA sample of another person without the informed consent of that person or his or her legal guardian, except in certain circumstances. Section 21 of this bill authorizes a person injured by such unauthorized genetic testing to bring a civil action. Section 12 of this bill newly establishes a category D felony for intentionally selling or otherwise transferring the DNA sample or genetic information of a person to another person or entity without the informed consent of the person from whom the sample was taken or to whom the genetic information pertains, as applicable, or his or her legal guardian, except in certain circumstances. Section 11 of this bill defines the term “DNA sample,” and section 13 of this bill establishes the applicability of that definition and certain existing definitions. Section 15 of this bill makes a conforming change to indicate the applicability of sections 11 and 12. Section 19 of this bill requires the State Board of Health to adopt regulations establishing procedures for obtaining informed consent where required by sections 12 and 16-18. EXPLANATION – Matter in bolded italics is new; matter between brackets [omitted material] is material to be omitted. THE PEOPLE OF THE STATE OF NEVADA, REPRESENTED IN SENATE AND ASSEMBLY, DO ENACT AS FOLLOWS: Section 1. Chapter 237 of NRS is hereby amended by adding thereto the provisions set forth as sections 2 to 8, inclusive, of this act. Sec. 2. As used in sections 2 to 8, inclusive, of this act, unless the context otherwise requires, the words and terms defined in sections 3, 4 and 5 of this act have the meanings ascribed to them in those sections. Sec. 3. “Autism-related data” means personally identifiable information which reveals that a person has been diagnosed with or otherwise determined to have an autism spectrum disorder or is suspected to have an autism spectrum disorder. – 3 – - 83rd Session (2025) Sec. 4. “Local government” means a political subdivision of this State or a quasi-municipal agency and includes, without limitation, a city, county, local health district, school district or charter school. Sec. 5. “State agency” means every public agency, bureau, board, commission, department or division of the Executive or Legislative Department of State Government. Sec. 6. 1. Except as authorized by this section, a state agency or local government, or a contractor or grantee of a state agency or local government acting within the scope of the contract or grant, shall not collect autism-related data. 2. A state agency or local government, or a contractor or grantee of a state agency or local government acting within the scope of the contract or grant, may collect autism-related data if the collection is necessary for: (a) The administration of a state or federal program to provide benefits to persons who have or are suspected of having autism spectrum disorders, including, without limitation: (1) The payment of providers of care or services to persons who have or are suspected of having autism spectrum disorders pursuant to such a program; (2) The provision of benefits under such a program; or (3) Ensuring access to or the opportunity to participate in such a program; (b) The provision of medical or specialized care or services to persons who have or are suspected of having autism spectrum disorders; (c) The audit or evaluation of a program of education supported by federal or state money or other measures to ensure compliance with federal or state law concerning such a program; or (d) Compliance with, or ensuring compliance with, state or federal law. 3. Any collection of autism-related data pursuant to subsection 2 must be performed in accordance with all applicable state and federal laws, including, without limitation, the Health Insurance Portability and Accountability Act of 1996, Public Law 104-191, and any applicable regulations adopted pursuant thereto. Sec. 7. 1. Except as authorized by this section: (a) A state agency or local government shall not disclose autism-related data to any person or entity outside of the state agency or local government except for a contractor or grantee of the state agency or local government. – 4 – - 83rd Session (2025) (b) A contractor or grantee of a state agency or local government shall not disclose autism-related data obtained from the state agency or local government or obtained within the scope of the contract or grant to any person or entity other than the state agency or local government. 2. Except as otherwise provided in subsection 3, a state agency or local government, or a contractor or grantee of a state agency or local government, may disclose autism-related data under the circumstances described in subsection 1 if: (a) The state agency, local government, contractor or grantee, as applicable, obtains the informed written consent of the person to whom the autism-related data pertains or his or her legal guardian for the specific disclosure; (b) The disclosure is required by an order or subpoena issued by a court of competent jurisdiction; (c) The disclosure is necessary to provide services or supports to the person to whom the autism-related data pertains, including, without limitation, services or supports related to education, medical care or housing; or (d) The disclosure is required to comply with state or federal law. 3. Any disclosure made pursuant to subsection 2 must involve the minimum amount of autism-related data necessary for the purpose for which the autism-related data is being disclosed. A state agency or local government, or a contractor or grantee of a state agency or local government, shall not disclose autism-related data pursuant to subsection 2 that reveals the name of the person to whom the autism-related data pertains if the disclosure of de- identified data will achieve the purpose for which the data is being disclosed. 4. As used in this section, “informed written consent” means the voluntary, written authorization by a person to whom autism- related data pertains, or his or her legal guardian, for a state agency or local government, or a contractor or grantee of a state agency or local government, to disclose the autism-related data after being clearly informed of the nature, scope, purpose, risks and potential consequences of the disclosure. Sec. 8. 1. On or before July 1 of each even-numbered year, the Office of the Governor shall: (a) Review compliance by the Executive Department of State Government and the grantees and contractors thereof with the requirements of sections 6 and 7 of this act; and – 5 – - 83rd Session (2025) (b) Make recommendations to agencies of the Executive Department and the Legislature as necessary to protect autism- related data and support the use of de-identified information for research relating to autism spectrum disorders. 2. The Director of the Department of Health and Human Services may appoint time-limited advisory groups of at least 5 and not more than 13 persons to evaluate and provide recommendations concerning the implementation of sections 2 to 8, inclusive, of this act. Each member of such an advisory group must be: (a) An officer or employee of a state agency or local government; (b) A person with an autism spectrum disorder or a family member of such a person; (c) An expert in data privacy; or (d) An attorney who advocates for the rights of persons with disabilities. 3. Members of an advisory group appointed pursuant to subsection 2 serve without compensation. 4. A member of an advisory group appointed pursuant to subsection 2 who is an officer or employee of a state agency or local government must be relieved from his or her duties without loss of regular compensation to prepare for and attend meetings of the advisory group and perform any work necessary to carry out the duties of the advisory group in the most timely manner practicable. A state agency or local government shall not require an officer or employee who is a member of the advisory group to: (a) Make up the time he or she is absent from work to carry out his or her duties as a member of the advisory group; or (b) Take annual leave or compensatory time for the absence. Sec. 9. NRS 239.010 is hereby amended to read as follows: 239.010 1. Except as otherwise provided in this section and NRS 1.4683, 1.4687, 1A.110, 3.2203, 41.0397, 41.071, 49.095, 49.293, 62D.420, 62D.440, 62E.516, 62E.620, 62H.025, 62H.030, 62H.170, 62H.220, 62H.320, 75A.100, 75A.150, 76.160, 78.152, 80.113, 81.850, 82.183, 86.246, 86.54615, 87.515, 87.5413, 87A.200, 87A.580, 87A.640, 88.3355, 88.5927, 88.6067, 88A.345, 88A.7345, 89.045, 89.251, 90.730, 91.160, 116.757, 116A.270, 116B.880, 118B.026, 119.260, 119.265, 119.267, 119.280, 119A.280, 119A.653, 119A.677, 119B.370, 119B.382, 120A.640, 120A.690, 125.130, 125B.140, 126.141, 126.161, 126.163, 126.730, 127.007, 127.057, 127.130, 127.140, 127.2817, 128.090, 130.312, 130.712, 136.050, 159.044, 159A.044, 164.041, 172.075, 172.245, – 6 – - 83rd Session (2025) 176.01334, 176.01385, 176.015, 176.0625, 176.09129, 176.156, 176A.630, 178.39801, 178.4715, 178.5691, 178.5717, 179.495, 179A.070, 179A.165, 179D.160, 180.600, 200.3771, 200.3772, 200.5095, 200.604, 202.3662, 205.4651, 209.392, 209.3923, 209.3925, 209.419, 209.429, 209.521, 211A.140, 213.010, 213.040, 213.095, 213.131, 217.105, 217.110, 217.464, 217.475, 218A.350, 218E.625, 218F.150, 218G.130, 218G.240, 218G.350, 218G.615, 224.240, 226.462, 226.796, 228.270, 228.450, 228.495, 228.570, 231.069, 231.1285, 231.1473, 232.1369, 233.190, 237.300, 239.0105, 239.0113, 239.014, 239B.026, 239B.030, 239B.040, 239B.050, 239C.140, 239C.210, 239C.230, 239C.250, 239C.270, 239C.420, 240.007, 241.020, 241.030, 241.039, 242.105, 244.264, 244.335, 247.540, 247.545, 247.550, 247.560, 250.087, 250.130, 250.140, 250.145, 250.150, 268.095, 268.0978, 268.490, 268.910, 269.174, 271A.105, 281.195, 281.805, 281A.350, 281A.680, 281A.685, 281A.750, 281A.755, 281A.780, 284.4068, 284.4086, 286.110, 286.118, 287.0438, 289.025, 289.080, 289.387, 289.830, 293.4855, 293.5002, 293.503, 293.504, 293.558, 293.57 [Text truncated for display. 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