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A10583Assembly2019-2020 SessionSame asS8448

Protect COVID Health Data

Official title

“Relates to requirements for the collection and use of emergency health data and personal information and the use of technology to aid during COVID-19”

Sponsor Linda RosenthalAD-67+5 co-sponsorsAffects Health
Status
In Assembly Committee
Health
Impact
8/10
Significant
Passage
0%

Bill progress

Step 2 of 7

In committee · Health

What's happening

This bill sets strict privacy, consent, and data security requirements for entities collecting or using personal health data during COVID-19.

Why it matters

  1. Establishes meaningful consent as the standard for data use. The bill requires that individuals must provide explicit, informed, and unambiguous opt-in consent before any personal or emergency health data related to COVID-19 can be collected, processed, or disclosed. This goes beyond implied consent and limits exceptions to rare security or anti-fraud situations, giving individuals much greater control over their sensitive health information.

  2. Prohibits commercial exploitation and discrimination. The legislation bans the use of collected health and personal data for advertising, employment, insurance, housing, or education decisions, and specifically prohibits discriminatory practices or the use of data to make allocation of care decisions based on disability. This helps prevent potential abuses by businesses or institutions seeking to profit from or unfairly categorize individuals based on their health data.

  3. Mandates strong transparency, accountability, and security. Covered entities must provide privacy policies written at a fourth-grade reading level, issue regular transparency reports, limit data retention, and implement robust security safeguards. Annual, independent third-party audits are required, and the results must be publicly available, ensuring that both the public and regulators can monitor compliance and data protection practices.

  4. Empowers individuals with access and correction rights. Individuals have the right to access their own health data, correct inaccuracies, and require deletion of their information once it's no longer needed, with strict timelines for compliance. This recognizes the importance of personal agency in managing one's digital and health identity during a public health crisis.

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Who cares

Headline styles

Protect COVID Health Data

Plain English, a few words. Used as the page title.

Sponsors

Primary sponsor
Linda Rosenthal

Assembly Member · Assembly District 67

Rules

History

  1. Print number 10583c
  2. Amend and recommit to health
  3. Print number 10583b
  4. Amend (t) and recommit to health
  5. Print number 10583a
  6. Amend and recommit to health
  7. Referred to health

Companion bill

The same bill in the other chamber. A bill becomes law when one version passes both houses and the governor signs it, so either number can carry it.

S8448Senate

Protect COVID Health Data

In Assembly Committee · Health · Sponsor Kevin Thomas

Impact 7 · Significant0% to pass

Full text

6 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗

STATE OF NEW YORK

10583--C

IN ASSEMBLY

June 4, 2020

Introduced by COMMITTEE ON RULES -- (at request of M. of A. L. Rosenthal, Dickens, Barron, Simon, Epstein) -- read once and referred to the Committee on Health -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee -- again reported from said committee with amendments, ordered reprinted as amended and recommitted to said committee -- 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 Assembly, do enact as follows:

Section 1. For the purposes of this act:

1. "Collect" means to buy, rent, gather, obtain, receive, or access any personal information pertaining to an individual by any means, online or offline, including but not limited to, receiving information from the individual or from a third party, actively or passively, or obtaining information by observing an individual's behavior.

2. "Covered entity" means any person, including a government entity:

(a) that collects, processes, or discloses emergency health data, as defined in this act, electronically or through communication by wire or radio; or

(b) that develops or operates a website, web application, mobile application, mobile operating system feature, or smart device application for the purpose of tracking, screening, monitoring, contact tracing, or mitigation, or otherwise responding to the COVID-19 public health emergency.

3. "De-identified information" means information that cannot reasonably identify, relate to, describe, be capable of being associated with, or be linked, directly or indirectly, to a particular individual, household, or device. A covered entity that uses de-identified information:

EXPLANATION--Matter in italics (underscored) is new; matter in brackets

[ ] is old law to be omitted.

LBD16478-15-0

A. 10583--C 2

(a) has implemented technical safeguards that prohibit re-identification of the individual to whom the information may pertain;

(b) has implemented business processes that specifically prohibit re-identification of the information;

(c) has implemented business processes that prevent inadvertent release of de-identified information; and

(d) makes no attempt to re-identify the information.

4. "Disclose" means any action, set of actions, or omission in which a covered entity makes personal information available to another person, intentionally or unintentionally, including but not limited to, sharing, publishing, releasing, transferring, disseminating, making available, selling, leasing, providing access to, failing to restrict access to, or otherwise communicating orally, in writing, electronically, or by any other means.

5. "Emergency health data" means data linked or reasonably linkable to an individual, household, or device, including data inferred or derived about the individual, household, or device from other collected data provided such data is still linked or reasonably linkable to the individual, household, or device, that concerns the public COVID-19 health emergency. Such data includes:

(a) Information that reveals the past, present, or future physical or behavioral health or condition of, or provision of healthcare to, an individual including:

(i) data derived from the testing or examination;

(ii) whether or not an individual has contracted or been tested for, or an estimate of the likelihood that a particular individual may contract, such disease or disorder; and

(iii) genetic data, biological samples and biometrics; and

(b) Other data collected in conjunction with other emergency health data that can be used to infer health status, health history, location or associations, including:

(i) geolocation data, when such term means data capable of determining the past or present precise physical location of an individual at a specific point in time, taking account of population densities, including cell-site location information, triangulation data derived from nearby wireless or radio frequency networks and global positioning system data;

(ii) proximity data, when such term means information that identifies or estimates the past or present physical proximity of one individual or device to another, including information derived from Bluetooth, audio signatures, nearby wireless networks, and near field communications;

(iii) demographic data;

(iv) contact information for identifiable individuals or a history of the individual's contacts over a period of time, such as an address book or call log; and

(v) any other data collected from a personal device.

6. "Individual" means a natural person whom the covered entity knows or has reason to know is located in New York state.

7. "Personal information" means information that identifies, relates to, describes, is capable of being associated with, or could reasonably be linked, directly or indirectly, with a particular individual or household, or device.

8. "Process" means any operation or set of operations that are performed on personal data by either automated or not automated means.

9. "Public health authority" means the New York state department of health, a county health department or the New York city department of

A. 10583--C 3

health and mental hygiene, or a person or entity acting under a grant of authority from or contract with such public agency, including the employees or agents of such public agency or its contractors or persons to entities to whom it has granted authority, that is responsible for public health matters as part of its official mandate.

§ 2. Individual rights.

1. The individual's right to opt-in. (a) A covered entity shall obtain freely given, specific, informed, and unambiguous opt-in consent from an individual to:

(i) process the individual's personal information or emergency health data; and

(ii) make any changes in the processing of the individual's personal information or emergency health data.

(b) It shall be unlawful for a covered entity to collect, process, or disclose emergency health data or personal information unless:

(i) the individual to whom the data pertains has freely given, specific, informed, and unambiguous consent to such collection, processing, or disclosure; or

(ii) such collection, processing, or disclosure is necessary and for the sole purpose of:

(A) protecting against malicious, deceptive, fraudulent, or illegal activity; or

(B) detecting, responding to, or preventing security incidents or threats.

(c) To the extent that a covered entity must process internet protocol addresses, system configuration information, URLs of referring pages, locale and language preferences, keystrokes, and other personal information in order to obtain individuals' freely given, specific, informed, and unambiguous opt-in consent, the entity:

(i) shall only process the personal information necessary to request freely given, specific, informed, and unambiguous opt-in consent;

(ii) shall process the personal information solely to request freely given, specific, informed, and unambiguous opt-in consent; and

(iii) shall immediately delete the personal information if consent is withheld or withdrawn.

2. The individual's right to privacy. (a) All emergency health data and personal information shall be collected at a minimum level of identifiability reasonably needed for the completion of the transaction disclosed to, affirmatively consented to, and requested by the individual. For a covered entity using proximity tracing or exposure notification this includes changing temporary anonymous identifiers at least once in a 20 minute period.

(b) A covered entity shall not process personal information or emergency health data beyond what is adequate, relevant, and necessary for the completion of the transaction disclosed to, affirmatively consented to, and requested by the individual.

(c) A covered entity shall not process emergency health data or personal information for any purpose not authorized under this act, including:

(i) commercial advertising, recommendation for e-commerce, or the training of machine learning algorithms related to, or subsequently for use in, commercial advertising and e-commerce;

(ii) soliciting, offering, selling, leasing, licensing, renting, advertising, marketing, or otherwise commercially contracting for employment, finance, credit, insurance, housing, or education; or

A. 10583--C 4

(iii) segregating, discriminating in, or otherwise making unavailable the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation (as such term is defined in section 301 of the Americans with Disabilities Act of 1990), except as authorized by a state or federal government entity for a public health purpose; provided that a covered entity shall not process emergency health data or personal information to make categorical decisions about the allocation of care based on disability.

3. Covered entity privacy policy. (a) A covered entity shall provide to the individual a privacy policy, at a fourth grade reading level or below and in the language the entity regularly uses to communicate with the individual, prior to or at the point of collection of emergency health data or personal information:

(i) detailing how and for what purpose the covered entity collects, processes, and discloses emergency health data and personal information;

(ii) describing the covered entity's data retention and data security policies and practices for emergency health data and personal information; and

(iii) describing how an individual may exercise rights under this section.

(b) A covered entity shall create transparency reports, at least once every 90 days, that include:

(i) the number of individuals whose emergency health data or personal information the covered entity collected or processed;

(ii) the categories of emergency health data and personal information collected, processed, or disclosed;

(iii) the purposes for which each category of emergency health data or personal information was collected, processed, or disclosed;

(iv) the number of requests for individuals' emergency health data or personal information, including information on who the emergency health data or personal information was disclosed to; and

(v) the number of instances where emergency health data or personal information was produced, in whole or in part, without prior, explicit consents by the individuals specified in the request.

(c) The covered entity shall make each transparency report persistently available and readily accessible on such entity's website.

4. Time limitation on retention. (a) Emergency health data and personal information shall be deleted when the initial purpose for collecting or obtaining such data has been satisfied or within 30 days, whichever occurs first, except that proximity tracing or exposure notification data which shall be automatically deleted every 14 days.

(b) This subdivision shall not apply to de-identified information.

5. Access rights. (a) Emergency health data and personal information shall be disclosed only as necessary to provide the service requested by an individual.

(b) A covered entity may share aggregate, de-identified data with public health authorities.

(c) A covered entity shall not disclose emergency health data or personal information to a third party unless that third party is contractually bound to the covered entity to meet the same privacy and security obligations as the covered entity.

(d) No covered entity in possession of emergency health data or personal information may disclose, redisclose, or otherwise disseminate an individual's emergency health data or personal information unless the subject of the emergency health data or personal information or the

A. 10583--C 5

subject's legally authorized representative consents in writing to the disclosure or redisclosure.

(e) Without consent under subdivision one of this section, emergency health data, personal information, and any evidence derived therefrom shall not be subject to or provided in response to any legal process or be admissible for any purpose in any judicial or administrative action or proceeding.

(f) Individuals shall have the right to access the emergency health data and personal information collected on them and correct any inaccuracies.

(i) A covered entity must comply with an individual's request to correct emergency health data or personal information not later than 30 days after receiving a verifiable request from the individual or, in the case of a minor, the individual's parent or guardian.

(ii) Where the covered entity has reasonable doubts or cannot verify the identity of the individual making a request under this paragraph, the covered entity may request additional information necessary for the specific purpose of confirming the identity of the individual. In such cases, the additional information shall not be processed for any purpose other than verifying the identity of the individual and must be deleted immediately upon verification or failure to verify the individual.

§ 3. 1. A covered entity shall implement reasonable measures to ensure confidentiality, integrity, and availability of emergency health data and personal information.

2. A covered entity that collects an individual's emergency health data or personal information shall implement and maintain reasonable security procedures and practices, including administrative, physical, and technical safeguards, appropriate to the nature of the information and the purposes for which that information will be processed, to protect that information from unauthorized processing, disclosure, access, destruction, or modification.

3. A covered entity shall limit access to emergency health data and personal information to authorized essential personnel whose use of the data is reasonably necessary to operate the program and record who has accessed emergency health data or personal information, the date of access, and for what purposes.

§ 4. 1. All covered entities shall be subject to annual data protection audits, conducted by a neutral third party auditor, evaluating the technology utilized and the development processes for statistical impacts on classes protected under section 296 of article 15 of the executive law, as well as for impacts on privacy and security, that includes at a minimum:

(a) a detailed description of the technology, its design, and its purpose;

Reflowed for reading: line numbers and page breaks removed. Cite the official text.

Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.