Bill Text: NY S08448 | 2019-2020 | General Assembly | Amended
Bill Title: Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency; requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data.
Spectrum: Partisan Bill (Democrat 10-0)
Status: (Engrossed - Dead) 2020-07-23 - referred to health [S08448 Detail]
Download: New_York-2019-S08448-Amended.html
STATE OF NEW YORK ________________________________________________________________________ 8448--D IN SENATE June 3, 2020 ___________ Introduced by Sens. THOMAS, BAILEY, CARLUCCI, GOUNARDES, HOYLMAN, MAY, RAMOS, STAVISKY -- read twice and ordered printed, and when printed to be committed to the Committee on Internet and Technology -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee -- committee discharged and said bill committed to the Committee on Health -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee AN ACT in relation to the collection of emergency health data and personal information and the use of technology to aid during COVID-19; and providing for the repeal of such provision upon the expiration thereof The People of the State of New York, represented in Senate and Assem- bly, do enact as follows: 1 Section 1. For the purposes of this act: 2 1. "Collect" means to buy, rent, gather, obtain, receive, or access 3 any personal information pertaining to an individual by any means, 4 online or offline, including but not limited to, receiving information 5 from the individual or from a third party, actively or passively, or 6 obtaining information by observing an individual's behavior. 7 2. "Covered entity" means any person, including a government entity: 8 (a) that collects, processes, or discloses emergency health data, as 9 defined in this act, electronically or through communication by wire or 10 radio; or 11 (b) that develops or operates a website, web application, mobile 12 application, mobile operating system feature, or smart device applica- 13 tion for the purpose of tracking, screening, monitoring, contact trac- 14 ing, or mitigation, or otherwise responding to the COVID-19 public 15 health emergency. 16 3. "De-identified information" means information that cannot reason- 17 ably identify, relate to, describe, be capable of being associated with, EXPLANATION--Matter in italics (underscored) is new; matter in brackets [] is old law to be omitted. LBD16478-14-0S. 8448--D 2 1 or be linked, directly or indirectly, to a particular individual, house- 2 hold, or device. A covered entity that uses de-identified information: 3 (a) has implemented technical safeguards that prohibit re-identifica- 4 tion of the individual to whom the information may pertain; 5 (b) has implemented business processes that specifically prohibit 6 re-identification of the information; 7 (c) has implemented business processes that prevent inadvertent 8 release of de-identified information; and 9 (d) makes no attempt to re-identify the information. 10 4. "Disclose" means any action, set of actions, or omission in which a 11 covered entity makes personal information available to another person, 12 intentionally or unintentionally, including but not limited to, sharing, 13 publishing, releasing, transferring, disseminating, making available, 14 selling, leasing, providing access to, failing to restrict access to, or 15 otherwise communicating orally, in writing, electronically, or by any 16 other means. 17 5. "Emergency health data" means data linked or reasonably linkable to 18 an individual, household, or device, including data inferred or derived 19 about the individual, household, or device from other collected data 20 provided such data is still linked or reasonably linkable to the indi- 21 vidual, household, or device, that concerns the public COVID-19 health 22 emergency. Such data includes: 23 (a) Information that reveals the past, present, or future physical or 24 behavioral health or condition of, or provision of healthcare to, an 25 individual including: 26 (i) data derived from the testing or examination; 27 (ii) whether or not an individual has contracted or been tested for, 28 or an estimate of the likelihood that a particular individual may 29 contract, such disease or disorder; and 30 (iii) genetic data, biological samples and biometrics; and 31 (b) Other data collected in conjunction with other emergency health 32 data that can be used to infer health status, health history, location 33 or associations, including: 34 (i) geolocation data, when such term means data capable of determining 35 the past or present precise physical location of an individual at a 36 specific point in time, taking account of population densities, includ- 37 ing cell-site location information, triangulation data derived from 38 nearby wireless or radio frequency networks and global positioning 39 system data; 40 (ii) proximity data, when such term means information that identifies 41 or estimates the past or present physical proximity of one individual or 42 device to another, including information derived from Bluetooth, audio 43 signatures, nearby wireless networks, and near field communications; 44 (iii) demographic data; 45 (iv) contact information for identifiable individuals or a history of 46 the individual's contacts over a period of time, such as an address book 47 or call log; and 48 (v) any other data collected from a personal device. 49 6. "Individual" means a natural person whom the covered entity knows 50 or has reason to know is located in New York state. 51 7. "Personal information" means information that identifies, relates 52 to, describes, is capable of being associated with, or could reasonably 53 be linked, directly or indirectly, with a particular individual or 54 household, or device. 55 8. "Process" means any operation or set of operations that are 56 performed on personal data by either automated or not automated means.S. 8448--D 3 1 9. "Public health authority" means the New York state department of 2 health, a county health department or the New York city department of 3 health and mental hygiene, or a person or entity acting under a grant of 4 authority from or contract with such public agency, including the 5 employees or agents of such public agency or its contractors or persons 6 to entities to whom it has granted authority, that is responsible for 7 public health matters as part of its official mandate. 8 § 2. Individual rights. 9 1. The individual's right to opt-in. (a) A covered entity shall obtain 10 freely given, specific, informed, and unambiguous opt-in consent from an 11 individual to: 12 (i) process the individual's personal information or emergency health 13 data; and 14 (ii) make any changes in the processing of the individual's personal 15 information or emergency health data. 16 (b) It shall be unlawful for a covered entity to collect, process, or 17 disclose emergency health data or personal information unless: 18 (i) the individual to whom the data pertains has freely given, specif- 19 ic, informed, and unambiguous consent to such collection, processing, or 20 disclosure; or 21 (ii) such collection, processing, or disclosure is necessary and for 22 the sole purpose of: 23 (A) protecting against malicious, deceptive, fraudulent, or illegal 24 activity; or 25 (B) detecting, responding to, or preventing security incidents or 26 threats. 27 (c) To the extent that a covered entity must process internet protocol 28 addresses, system configuration information, URLs of referring pages, 29 locale and language preferences, keystrokes, and other personal informa- 30 tion in order to obtain individuals' freely given, specific, informed, 31 and unambiguous opt-in consent, the entity: 32 (i) shall only process the personal information necessary to request 33 freely given, specific, informed, and unambiguous opt-in consent; 34 (ii) shall process the personal information solely to request freely 35 given, specific, informed, and unambiguous opt-in consent; and 36 (iii) shall immediately delete the personal information if consent is 37 withheld or withdrawn. 38 2. The individual's right to privacy. (a) All emergency health data 39 and personal information shall be collected at a minimum level of iden- 40 tifiability reasonably needed for the completion of the transaction 41 disclosed to, affirmatively consented to, and requested by the individ- 42 ual. For a covered entity using proximity tracing or exposure notifica- 43 tion this includes changing temporary anonymous identifiers at least 44 once in a 20 minute period. 45 (b) A covered entity shall not process personal information or emer- 46 gency health data beyond what is adequate, relevant, and necessary for 47 the completion of the transaction disclosed to, affirmatively consented 48 to, and requested by the individual. 49 (c) A covered entity shall not process emergency health data or 50 personal information for any purpose not authorized under this act, 51 including: 52 (i) commercial advertising, recommendation for e-commerce, or the 53 training of machine learning algorithms related to, or subsequently for 54 use in, commercial advertising and e-commerce;S. 8448--D 4 1 (ii) soliciting, offering, selling, leasing, licensing, renting, 2 advertising, marketing, or otherwise commercially contracting for 3 employment, finance, credit, insurance, housing, or education; or 4 (iii) segregating, discriminating in, or otherwise making unavailable 5 the goods, services, facilities, privileges, advantages, or accommo- 6 dations of any place of public accommodation (as such term is defined in 7 section 301 of the Americans with Disabilities Act of 1990), except as 8 authorized by a state or federal government entity for a public health 9 purpose; provided that a covered entity shall not process emergency 10 health data or personal information to make categorical decisions about 11 the allocation of care based on disability. 12 3. Covered entity privacy policy. (a) A covered entity shall provide 13 to the individual a privacy policy, at a fourth grade reading level or 14 below and in the language the entity regularly uses to communicate with 15 the individual, prior to or at the point of collection of emergency 16 health data or personal information: 17 (i) detailing how and for what purpose the covered entity collects, 18 processes, and discloses emergency health data and personal information; 19 (ii) describing the covered entity's data retention and data security 20 policies and practices for emergency health data and personal informa- 21 tion; and 22 (iii) describing how an individual may exercise rights under this 23 section. 24 (b) A covered entity shall create transparency reports, at least once 25 every 90 days, that include: 26 (i) the number of individuals whose emergency health data or personal 27 information the covered entity collected or processed; 28 (ii) the categories of emergency health data and personal information 29 collected, processed, or disclosed; 30 (iii) the purposes for which each category of emergency health data or 31 personal information was collected, processed, or disclosed; 32 (iv) the number of requests for individuals' emergency health data or 33 personal information, including information on who the emergency health 34 data or personal information was disclosed to; and 35 (v) the number of instances where emergency health data or personal 36 information was produced, in whole or in part, without prior, explicit 37 consents by the individuals specified in the request. 38 (c) The covered entity shall make each transparency report persistent- 39 ly available and readily accessible on such entity's website. 40 4. Time limitation on retention. (a) Emergency health data and 41 personal information shall be deleted when the initial purpose for 42 collecting or obtaining such data has been satisfied or within 30 days, 43 whichever occurs first, except that proximity tracing or exposure 44 notification data which shall be automatically deleted every 14 days. 45 (b) This subdivision shall not apply to de-identified information. 46 5. Access rights. (a) Emergency health data and personal information 47 shall be disclosed only as necessary to provide the service requested by 48 an individual. 49 (b) A covered entity may share aggregate, de-identified data with 50 public health authorities. 51 (c) A covered entity shall not disclose emergency health data or 52 personal information to a third party unless that third party is 53 contractually bound to the covered entity to meet the same privacy and 54 security obligations as the covered entity. 55 (d) No covered entity in possession of emergency health data or 56 personal information may disclose, redisclose, or otherwise disseminateS. 8448--D 5 1 an individual's emergency health data or personal information unless the 2 subject of the emergency health data or personal information or the 3 subject's legally authorized representative consents in writing to the 4 disclosure or redisclosure. 5 (e) Without consent under subdivision one of this section, emergency 6 health data, personal information, and any evidence derived therefrom 7 shall not be subject to or provided in response to any legal process or 8 be admissible for any purpose in any judicial or administrative action 9 or proceeding. 10 (f) Individuals shall have the right to access the emergency health 11 data and personal information collected on them and correct any inaccu- 12 racies. 13 (i) A covered entity must comply with an individual's request to 14 correct emergency health data or personal information not later than 30 15 days after receiving a verifiable request from the individual or, in the 16 case of a minor, the individual's parent or guardian. 17 (ii) Where the covered entity has reasonable doubts or cannot verify 18 the identity of the individual making a request under this paragraph, 19 the covered entity may request additional information necessary for the 20 specific purpose of confirming the identity of the individual. In such 21 cases, the additional information shall not be processed for any purpose 22 other than verifying the identity of the individual and must be deleted 23 immediately upon verification or failure to verify the individual. 24 § 3. 1. A covered entity shall implement reasonable measures to ensure 25 confidentiality, integrity, and availability of emergency health data 26 and personal information. 27 2. A covered entity that collects an individual's emergency health 28 data or personal information shall implement and maintain reasonable 29 security procedures and practices, including administrative, physical, 30 and technical safeguards, appropriate to the nature of the information 31 and the purposes for which that information will be processed, to 32 protect that information from unauthorized processing, disclosure, 33 access, destruction, or modification. 34 3. A covered entity shall limit access to emergency health data and 35 personal information to authorized essential personnel whose use of the 36 data is reasonably necessary to operate the program and record who has 37 accessed emergency health data or personal information, the date of 38 access, and for what purposes. 39 § 4. 1. All covered entities shall be subject to annual data 40 protection audits, conducted by a neutral third party auditor, evaluat- 41 ing the technology utilized and the development processes for statis- 42 tical impacts on classes protected under section 296 of article 15 of 43 the executive law, as well as for impacts on privacy and security, that 44 includes at a minimum: 45 (a) a detailed description of the technology, its design, and its 46 purpose; 47 (b) an assessment of the relative benefits and costs of the technology 48 in light of its purpose, taking into account relevant factors including 49 data minimization practices; the duration for which personal information 50 and emergency health data and the results of the data analysis are 51 stored; what information about the technology is available to the 52 public; and the recipients of the results of the technology; 53 (c) an assessment of the risk of harm posed by the technology; the 54 risk that the technology may result in or contribute to inaccurate, 55 unfair, biased, or discriminatory decisions; the risk that the technolo- 56 gy may dissuade New Yorkers from participating in contact tracing orS. 8448--D 6 1 obtaining medical testing or treatment; and the risk that personal 2 information or emergency health data can be accessed by third parties, 3 including, but not limited to law enforcement agencies and U.S. Immi- 4 gration and Customs Enforcement; and 5 (d) the measures the covered entity will employ to minimize the risks 6 described in paragraph (c) of this subdivision, including technological, 7 legal and physical safeguards; 8 (e) an assessment of whether the covered entity has followed through 9 on the promises made in its privacy notice regarding collection, access, 10 sharing, retention, deletion and sunsetting; and 11 (f) if the technology utilizes machine-learning systems, a description 12 of the training data information. 13 2. The covered entity shall make the audit persistently available and 14 readily accessible on such entity's website. 15 3. The cost of the audit shall be paid by the covered entity. 16 § 5. The attorney general may bring an action in the name of the 17 state, or as parens patriae on behalf of persons residing in the state, 18 to enforce the provisions of this act. In an action brought by the 19 attorney general, the court may award injunctive relief, including 20 preliminary injunctions, to prevent further violations of and compel 21 compliance with this act; civil penalties up to twenty-five thousand 22 dollars per violation or up to four percent of annual revenue; other 23 appropriate relief, including restitution, to redress harms to individ- 24 uals or to mitigate all substantial risk of harm; and any other relief 25 the court determines. 26 § 6. Severability. If any clause, sentence, paragraph, subdivision, 27 section or part of this act shall be adjudged by any court of competent 28 jurisdiction to be invalid, such judgment shall not affect, impair, or 29 invalidate the remainder thereof, but shall be confined in its operation 30 to the clause, sentence, paragraph, subdivision, section or part thereof 31 directly involved in the controversy in which such judgment shall have 32 been rendered. It is hereby declared to be the intent of the legislature 33 that this act would have been enacted even if such invalid provisions 34 had not been included herein. 35 § 7. This act shall take effect on the thirtieth day after it shall 36 have become a law and shall expire and be deemed repealed January 1, 37 2023.
