Rep. Mary Beth Canty

Filed: 5/28/2026

 

 


 

 


 
10400SB3222ham001LRB104 19119 BAB 38481 a

1
AMENDMENT TO SENATE BILL 3222

2    AMENDMENT NO. ______. Amend Senate Bill 3222 by replacing
3everything after the enacting clause with the following:
 
4    "Section 1. Short title. This Act may be cited as the
5Protect Health Data Privacy Act.
 
6    Section 5. Definitions. As used in this Act:
7    "Affiliate" means a legal entity that shares common
8branding with another legal entity or controls, is controlled
9by or is under common control with another legal entity. For
10the purposes of this definition, "control" and "controlled"
11mean (1) ownership of, or the power to vote, more than 50% of
12the outstanding shares of any class of voting security of a
13company, (2) control in any manner over the election of a
14majority of the directors or of individuals exercising similar
15functions, or (3) the power to exercise controlling influence
16over the management of a company.

 

 

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1    "Collect" means to buy, rent, lease, access, retain,
2receive, derive, or acquire health data in any manner,
3including receiving the data from an individual, either
4actively or passively, or by observing or tracking the
5individual's online activity or precise location.
6    "Consent" means a clear, affirmative act by an individual
7that unambiguously communicates the individual's express,
8freely given, informed, opted-into, voluntary, specific, and
9unambiguous written agreement, including written consent
10provided by electronic means to the processing or sale of
11health data. "Consent" does not include implied consent or
12consent obtained by:
13        (1) acceptance of a general or broad terms of use
14    agreement or a similar document that contains descriptions
15    of personal data processing along with other, unrelated
16    information;
17        (2) hovering over, muting, pausing, or closing a given
18    piece of digital content; or
19        (3) agreement obtained through the use of deceptive
20    designs.
21    "Deceptive design" means any user interface or element
22thereof that has the substantial effect of subverting,
23impairing, or impeding an individual's autonomy,
24decision-making, or choice.
25    "Deidentified data" means data that cannot be used to
26infer information about, or otherwise be linked to, an

 

 

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1identified or identifiable individual, or a device linked to
2such individual.
3    "Geofence" means technology that uses global positioning
4coordinates, cell tower connectivity, cellular data, radio
5frequency identification, wireless Internet data, or any other
6form of spatial or location detection to establish a virtual
7boundary around a specific physical location, or to locate an
8individual within a virtual boundary that is no more than
91,750 feet around a specific physical location.
10    "Health data" means (1) an individual's personal
11information that identifies a past or present health condition
12of that individual, or (2) information that is linked or can be
13reasonably linked to an individual that a regulated entity
14derives or extrapolates from nonhealth information that a
15regulated entity uses or processes to determine a past,
16present, or future health condition of that individual.
17    "Health data" includes any information relating to an
18individual's:
19        (1) health conditions, status, diseases, diagnoses, or
20    testing;
21        (2) health-related treatment, surgeries, or
22    procedures;
23        (3) use or purchase of medication;
24        (4) social, psychological, behavioral, and medical
25    interventions;
26        (5) measurement or tracking of bodily functions, vital

 

 

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1    signs, or symptoms;
2        (6) responses to and results from online screenings
3    and online tests and quizzes regarding the individual's
4    health conditions that are used to determine an
5    individual's health condition;
6        (7) efforts to research or obtain health services or
7    supplies;
8        (8) health services or products that support or relate
9    to lawful health care, as defined in Section 28-10 of the
10    Lawful Health Care Activity Act; and
11        (9) precise location information used to determine an
12    individual's attempt to acquire or receive health services
13    or supplies.
14    "Health data" does not include:
15        (1) information about an individual's purchase or
16    acquisition of retail goods or services that the regulated
17    entity uses or processes for a purpose other than to
18    determine an individual's past, present, or future
19    physical or mental health condition; or
20        (2) deidentified data.
21    "Health services" means any service, medical care, or
22information related to an individual's health condition
23provided to an individual.
24    "HIPAA" means the Health Insurance Portability and
25Accountability Act of 1996, Public Law 104-191, the Health
26Information Technology for Economic and Clinical Health Act,

 

 

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1and any subsequent amendments thereto and any regulations
2promulgated thereunder, including the Privacy Rule, as
3specified in 45 CFR 164.500-534, the Security Rule, as
4specified in 45 CFR 164.302-318, and the Breach Notification
5rule, as specified in 45 CFR 164.400-414.
6    "Homepage" means the introductory page of a website where
7personal information is collected. In the case of an online
8service, such as a mobile application, "homepage" means the
9application's platform page or download page, such as from the
10application configuration, "About" page, "Information" page,
11or "Settings" page, and any other location that allows
12individuals to review the notice.
13    "Individual" means a natural person who is a resident of
14this State or whose health data is collected when present in
15this State, however identified, including by any unique
16identifier. "Individual" does not include a person acting
17within the scope of the person's duties as an employee,
18independent contractor, officer, board member, or sole
19proprietorship.
20    "Person" means, where applicable, natural persons,
21corporations, trusts, unincorporated associations, and
22partnerships. "Person" does not include (1) any branch of
23State government, unit of local government, or school
24district; (2) any tribal nation, or (3) any contractor,
25subcontractor, or agent that processes health data on behalf
26of, and in accordance with the terms and conditions of a

 

 

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1contract with, any branch of State government, tribal nation,
2unit of local government, or school district.
3    "Personal information" means information that identifies,
4is reasonably capable of being associated with, or is linked,
5directly or indirectly, with a particular individual or
6household. "Personal information" includes, but is not limited
7to, data associated with a persistent unique identifier, such
8as a cookie ID, an IP address, a device identifier, or any
9other form of persistent unique identifier. "Personal
10information" does not include publicly available information
11or deidentified data.
12    "Precise location information" means information derived
13from technology, including, but not limited to, Global
14Positioning System level latitude and longitude coordinates or
15other mechanisms, that identifies the specific location of an
16individual with precision and accuracy within a radius of
171,750 feet. "Precise location information" does not include:
18(1) the content of communications, or (2) any data generated
19by or connected to advanced utility metering infrastructure
20systems or equipment for use by a utility.
21    "Process" or "processing" means any operation or set of
22operations performed, whether by manual or automated means, on
23personal information or on sets of personal information,
24whether alone or in combination with other data, such as the
25collection, use, access, sharing, analysis, retention,
26creation, generation, derivation, recording, organization,

 

 

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1structuring, storage, disclosure, transmission, disposal,
2licensing, destruction, deletion, retrieval, modification, or
3deidentification of health data.
4    "Processor" means a person or legal entity that processes
5health data on behalf of a regulated entity pursuant to a
6written agreement or contract.
7    "Publicly available" means information that is made
8available to the general public from (1) federal, State, or
9local government records; (2) widely distributed media,
10including health data intentionally made available by the
11individual to the general public and in which the individual
12did not maintain a reasonable expectation of privacy; or (3) a
13disclosure that has been made to the general public as
14required by federal, State, or local law. "Publicly available
15information" does not include (1) personal information that is
16created through the combination of personal information with
17publicly available information; (2) information made available
18by an individual on a website or online service open to all
19members of the public, for free or for a fee, where the
20individual has maintained a reasonable expectation of privacy
21by restricting the information to a specific audience; or (3)
22any obscene visual depiction, as defined in 18 U.S.C. 1460.
23    "Regulated entity" means any individual, partnership,
24corporation, limited liability company, or association that:
25(1) conducts business in this State, or produces or provides
26products or services that are available to individuals in this

 

 

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1State; and (2) determines the purpose and means of processing
2or selling of health data.
3    "Regulated entity" does not include:
4        (1) any branch of State government, a tribal nation, a
5    unit of local government, or a school district;
6        (2) a contractor, subcontractor, or agent that
7    processes health data on behalf of, and in accordance with
8    the terms and conditions of a contract with, any branch of
9    State government, a tribal nation, a unit of local
10    government, or a school district;
11        (3) a processor that processes health data on behalf
12    of a regulated entity;
13        (4) a not-for-profit legal entity that is subject to
14    and in compliance with the Illinois Insurance Guaranty
15    Fund Article of the Illinois Insurance Code or the Life
16    and Health Insurance Guaranty Association Article of the
17    Illinois Insurance Code, to the extent such entity is
18    acting in a capacity subject to the supervision of the
19    Department of Insurance;
20        (5) a covered entity or a business associate, as
21    defined in 45 CFR 160.103, subject to and in substantial
22    compliance with HIPAA to the extent such entity is acting
23    as a covered entity or business associate under the
24    Privacy and Security rules issued by the United States
25    Department of Health and Human Services, Parts 160 and 164
26    of Title 45 of the Code of Federal Regulations;

 

 

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1        (6) any entity that is subject to and in compliance
2    with restrictions on disclosure of records under Section
3    543 of the Public Health Service Act, 42 U.S.C. 290dd-2,
4    to the extent such entity is acting in a capacity subject
5    to such restrictions; or
6        (7) an entity that is subject to and in compliance
7    with the Insurance Information and Privacy Protection
8    Article of the Illinois Insurance Code, the Insurance Data
9    Security Law, and any corresponding privacy protection
10    rules adopted by the Director of Insurance to the extent
11    such entity is acting in a capacity subject to such laws
12    and rules.
13    "Sell" or "sale" means the exchange of health data for
14monetary or other valuable consideration.
15    "Sell" or "sale" does not include:
16        (1) the sharing or transfer of an individual's health
17    data by a regulated entity to a processor that processes
18    the individual's health data on behalf of the regulated
19    entity;
20        (2) the sharing or transfer of an individual's health
21    data to an affiliate of the regulated entity;
22        (3) the sharing or transfer of an individual's health
23    data by a regulated entity to a third party with whom the
24    individual has a direct relationship when the sharing is
25    for the purpose of, and only to the extent necessary for
26    providing a product or service requested by the

 

 

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1    individual, and the third party maintains or uses the
2    individual's health data consistent with the purpose for
3    which it was collected and consented to by the individual;
4        (4) the sharing or transfer of an individual's health
5    data when the individual directs the regulated entity to
6    disclose the individual's health data or intentionally
7    uses the regulated entity to interact with a third party;
8        (5) the sharing or transfer of an individual's health
9    data to a third party as an asset that is part of a merger,
10    acquisition, bankruptcy, or other transaction in which the
11    third party assumes control of all or part of the
12    regulated entity's assets and complies with the
13    requirements and obligations in this Act, but only if the
14    regulated entity, within a reasonable time before the
15    exchange, provides the affected individual with:
16            (A) a notice describing the transfer, including
17        the name of the entity receiving the individual's
18        health data and the applicable privacy policies of the
19        entity; and
20            (B) a reasonable opportunity to withdraw
21        previously provided consent related to the
22        individual's health data and request the deletion of
23        the individual's health data; and
24        (6) the sharing or transfer of an individual's
25    publicly available health data.
26    "Share" or "sharing" means to release, disclose,

 

 

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1disseminate, divulge, loan, make available, provide access to,
2license, transfer, or otherwise communicate orally, in
3writing, or by electronic or other means, an individual's
4health data by a regulated entity to a third party, except
5where the regulated entity maintains exclusive control and
6ownership of the health data.
7    "Share" or "sharing" does not include:
8        (1) the sharing or transfer of an individual's health
9    data by a regulated entity to a processor that processes
10    the individual's health data on behalf of the regulated
11    entity;
12        (2) the sharing or transfer of an individual's health
13    data to an affiliate of the regulated entity;
14        (3) the sharing or transfer of an individual's health
15    data by a regulated entity to a third party with whom the
16    individual has a direct relationship when the sharing is
17    for the purpose of, and only to the extent necessary for
18    providing a product or service requested by the
19    individual, and the third party maintains or uses the
20    individual's health data consistent with the purpose for
21    which it was collected and consented to by the individual;
22        (4) the sharing or transfer of an individual's health
23    data when the individual directs the regulated entity to
24    disclose the individual's health data or intentionally
25    uses the regulated entity to interact with a third party;
26        (5) the sharing or transfer of an individual's health

 

 

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1    data to a third party as an asset that is part of a merger,
2    acquisition, bankruptcy, or other transaction in which the
3    third party assumes control of all or part of the
4    regulated entity's assets and complies with the
5    requirements and obligations in this Act, but only if the
6    regulated entity, within a reasonable time before the
7    exchange, provides the affected individual with:
8            (A) a notice describing the transfer, including
9        the name of the entity receiving the individual's
10        health data and the applicable privacy policies of the
11        entity; and
12            (B) a reasonable opportunity to withdraw
13        previously provided consent related to the
14        individual's health data and request the deletion of
15        the individual's health data; and
16        (6) the sharing or transfer of an individual's
17    publicly available health data.
18    "Strictly necessary" means essential or required to be
19done.
20    "Substantial compliance" means a level of compliance with
21Title 45 of the Code of Federal Regulations Sections 164.502,
22164.508, 164.510, 164.512, 164.514, 164.520, 164.522, 164.524,
23164.526, 164.528, and 164.530 that does not arise from gross
24negligence, recklessness, or willful misconduct by the entity
25acting as a covered entity or business associate.
26    "Third party" means an entity other than an individual,

 

 

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1regulated entity, processor, or affiliate of the regulated
2entity.
3    "Unit of local government" means a county, municipality,
4township, special district, or any other unit designated as a
5unit of local government by law.
 
6    Section 10. Health data privacy policy required.
7    (a) A regulated entity shall disclose and maintain a
8health data privacy policy that, in plain language, clearly
9and conspicuously includes and discloses:
10        (1) the categories of health data processed, including
11    the specific categories of health data collected, the
12    purposes for which the health data is collected, and how
13    the health data will be used;
14        (2) the categories of sources from which health data
15    is collected;
16        (3) whether the regulated entity collects health data
17    when the individual is not directly interacting with the
18    regulated entity or its services;
19        (4) the specific categories of health data shared and
20    sold;
21        (5) the categories of third parties to whom the
22    regulated entity shares and sells health data, if
23    applicable;
24        (6) the process for opt-in consent to collection of
25    health data;

 

 

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1        (7) how to withdraw consent from the collection,
2    processing, and selling of an individual's health data;
3        (8) the process to withdraw consent from having health
4    data collected;
5        (9) the length of time the regulated entity intends to
6    retain each category of health data, or if that is not
7    possible, the criteria used to determine that period;
8    however, a regulated entity shall not retain health data
9    for each disclosed purpose for which the health data was
10    collected for longer than is reasonably necessary to
11    fulfill that disclosed purpose or as otherwise permitted
12    by this Act;
13        (10) how an individual may exercise the rights
14    provided in this Act, including, but not limited to,
15    identifying 2 or more designated methods for an individual
16    to contact the regulated entity in connection with the
17    exercise of any rights provided in this Act;
18        (11) an active email address or other online mechanism
19    that the individual may use to contact the regulated
20    entities, free of charge; and
21        (12) the date the health data privacy notice was last
22    updated.
23    (b) A regulated entity shall prominently publish or link
24to its health data privacy policy on its website homepage,
25mobile application, or in another manner that is clear and
26conspicuous to individuals. A regulated entity's health data

 

 

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1privacy policy must be distinguishable from other matters. Any
2regulated entity providing health services in a physical
3location shall also post its health data privacy policy in a
4conspicuous place that is readily available for viewing by
5individuals.
6    (c) A regulated entity shall not process or sell
7additional categories of health data not disclosed in the
8health data privacy policy without first disclosing the
9additional categories of health data and obtaining the
10individual's consent before the processing or selling of the
11health data.
12    (d) A regulated entity shall not process or sell health
13data for additional purposes not disclosed in the health data
14privacy policy without first disclosing the additional
15purposes and obtaining the individual's consent before the
16processing or selling of the health data.
17    (e) It is a violation of this Act for a regulated entity to
18contract with a processor to process an individual's health
19data in a manner that is inconsistent with the regulated
20entity's health data privacy policy.
 
21    Section 15. Processing of health data.
22    (a) Except as provided in subsection (c), a regulated
23entity shall not process an individual's health data unless it
24first obtains consent of the individual to whom the data
25relates. Before a regulated entity processes an individual's

 

 

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1health data, it shall first:
2        (1) disclose its health data privacy policy as
3    required under Section 10; and
4        (2) separate from the health data privacy policy,
5    request the individual's consent to process the
6    information for a specified purpose and clearly and
7    conspicuously disclose within the request the following
8    information:
9            (A) the categories of health data processed;
10            (B) the regulated entity's specific purpose for
11        processing the health data, including the specific
12        ways in which the individual's health data will be
13        used;
14            (C) the categories of entities with whom the
15        health data is shared; and
16            (D) how the individual can withdraw consent from
17        future processing of the individual's health data.
18    (b) A regulated entity shall not process an individual's
19health data for any additional purpose that was not
20specifically disclosed and consented to by the individual in
21accordance with this Act.
22    (c) Consent to process an individual's health data is not
23required if the individual's health data is processed only for
24one or more of the following permissible purposes:
25        (1) as is strictly necessary to provide a product,
26    service, or service feature that the individual to whom

 

 

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1    the health data relates has specifically requested from
2    the regulated entity;
3        (2) to initiate, manage, execute, or complete a
4    financial or commercial transaction or to fulfill an order
5    for a specific product or service requested by an
6    individual to whom the individual health data pertains,
7    including, but not limited to, associated routine
8    administrative, operational, or account-servicing
9    activity, such as billing, shipping, storage, or
10    accounting;
11        (3) to comply with an obligation under a law of this
12    State or federal law;
13        (4) to protect public safety or public health;
14        (5) to prevent, detect, protect against, or respond to
15    a security incident, identity theft, fraud, harassment,
16    malicious or deceptive activities, or activities that are
17    illegal under the laws of this State;
18        (6) to preserve the integrity or security of systems;
19    or
20        (7) to investigate, report, or prosecute persons
21    responsible for activities that are illegal under the laws
22    of this State.
23    (d) For purposes of this Act, the processing of precise
24location information or health data to provide transportation
25services by private entities regulated under the
26Transportation Network Providers Act is strictly necessary to

 

 

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1the extent that the private entity uses the precise location
2information or health data for the sole purpose of providing a
3service requested by the individual or the use is otherwise
4consistent with that individual's reasonable expectations,
5considering the context in which the individual provided the
6precise location information to the private entity.
 
7    Section 20. Sale of health data.
8    (a) It is unlawful for any regulated entity to sell or
9offer to sell health data concerning an individual without
10first obtaining consent required under Section 15 and valid
11authorization from the individual. The sale of individual
12health data must be consistent with the valid authorization
13signed or electronically documented by the individual.
14    (b) A valid authorization to sell an individual's health
15data is an agreement consistent with this Section and must be
16provided in plain language. The valid authorization to sell
17the individual's health data must contain the following:
18        (1) the specific health data concerning the individual
19    that the regulated entity intends to sell;
20        (2) the name and contact information of the regulated
21    entity collecting and selling the health data;
22        (3) the name and contact information of the regulated
23    entity purchasing the health data from the seller
24    identified in paragraph (2) of this subsection;
25        (4) a description of the purpose for the sale,

 

 

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1    including how the health data will be gathered and how it
2    will be used by the purchaser identified in paragraph (3)
3    of this subsection when sold;
4        (5) a statement that the provision of goods or
5    services may not be conditioned on the individual signing
6    the valid authorization;
7        (6) a statement that the individual has a right to
8    revoke the valid authorization at any time and a
9    description on how an individual may revoke the valid
10    authorization;
11        (7) a statement that the individual health data sold
12    pursuant to the valid authorization may be subject to
13    redisclosure by the purchaser and may no longer be
14    protected by this Section;
15        (8) an expiration date for the valid authorization
16    that expires one year after the individual signs the valid
17    authorization, unless the individual extends the valid
18    authorization before it expires. The individual may renew
19    the individual's valid authorization annually if the
20    regulated entity provides the individual with a notice
21    that alerts the individual that the valid authorization
22    will expire within 30 days before the expiration date and
23    provides the individual with a mechanism that allows the
24    individual to renew the valid authorization for an
25    additional year or withdraw consent; and
26        (9) the signature of the individual and date.

 

 

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1    (c) An authorization is not valid if the document has any
2of the following defects:
3        (1) the expiration date has passed and the individual
4    did not sign an updated valid authorization before the
5    expiration date passed;
6        (2) the valid authorization does not contain all the
7    information required under this Section;
8        (3) the valid authorization has been revoked by the
9    individual;
10        (4) the valid authorization has been combined with
11    other documents to create a compound authorization; or
12        (5) the provision of goods or services is conditioned
13    on the individual signing the authorization.
14    (d) A copy of the signed valid authorization must be
15provided to the individual.
16    (e) The seller and purchaser of health data must retain a
17copy of all valid authorizations for the sale of health data
18for 6 years after the date of its signature or the date when it
19was last in effect, whichever is later.
 
20    Section 25. Rights and requests
21    (a) An individual has the right to confirm: (i) whether a
22regulated entity has, or is, processing or selling the
23individual's health data and to access such data, including a
24list of all third parties and affiliates with whom the
25regulated entity shared or sold the individual's health data,

 

 

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1and an active email address or other online mechanism that the
2individual may use to contact these third parties; and (ii)
3that a regulated entity has deleted the individual's health
4data following a deletion request pursuant to subsection (c).
5        (1) A regulated entity that receives an individual's
6    request to confirm shall respond within 45 calendar days
7    after receiving the request to confirm from the
8    individual.
9        (2) The regulated entity shall, without reasonable
10    delay, promptly take all steps necessary to verify the
11    individual's request, but this shall not extend the
12    regulated entity's duty to respond within 45 calendar days
13    after receipt of the individual's request.
14        (3) The time period to provide the required
15    confirmation may be extended once by an additional 45
16    calendar days when reasonably necessary if the individual
17    is provided notice of the extension within the first
18    45-day period.
19    (b) An individual has the right to withdraw (i) consent
20for processing, including collection and sharing, and (ii)
21authorization for the sale of health data consistent with the
22requirements of Sections 15 and 20, respectively.
23        (1) An individual may exercise rights under this
24    subsection (b) by submitting a request to a regulated
25    entity using the method the regulated entity specifies in
26    the privacy policy under paragraph (10) of subsection (a)

 

 

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1    of Section 10.
2        (2) A regulated entity may cease providing a product,
3    service, or service feature upon the withdrawal of consent
4    for collection if the collection of health data is
5    strictly necessary to provide that product, service, or
6    service feature.
7    (c) An individual whose health data is collected by a
8regulated entity has the right to have the individual's health
9data that is collected by a regulated entity deleted by
10informing the regulated entity of the individual's request for
11deletion, except as provided in paragraph (6) of this
12subsection.
13        (1) Except as otherwise specified in paragraph (5), a
14    regulated entity that receives an individual's request to
15    delete any of the individual's health data shall, without
16    unreasonable delay, and no more than 45 calendar days
17    after receiving the deletion request:
18            (A) delete the individual's health data from its
19        records, including from all parts of the regulated
20        entity's network; and
21            (B) notify all processors, affiliates, and third
22        parties with whom the regulated entity has shared the
23        individual's health data of the deletion request.
24        (2) If a regulated entity stores any health data on
25    archived or backup systems, it may delay compliance with
26    the individual's request to delete with respect to the

 

 

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1    health data stored on the archived or backup system until
2    the archived or backup system relating to that data is
3    restored to an active system or is next accessed or used.
4        (3) Any processors, affiliates, or other third parties
5    that receive notice of an individual's deletion request
6    from a regulated entity shall honor the individual's
7    deletion request and delete the health data from the
8    regulated entity's records, including from all parts of
9    its network or backup systems.
10        (4) An individual or an individual's authorized agent
11    may exercise the rights set forth in this Act by
12    submitting a request, at any time, to a regulated entity.
13    This request may be made by:
14            (A) contacting the regulated entity in the manner
15        included in its health data privacy policy;
16            (B) by designating an authorized agent who may
17        exercise the rights on behalf of the individual;
18            (C) in the case of collecting health data of a
19        minor, the minor seeking health services may exercise
20        their rights under this Act, or the parent or legal
21        guardian of the minor may exercise the minor's rights
22        of this Act on the minor's behalf; or
23            (D) in the case of collecting health data
24        concerning an individual subject to guardianship,
25        conservatorship, or other protective arrangement under
26        the Probate Act of 1975, the guardian or the

 

 

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1        conservator of the individual may exercise the rights
2        of this Act on the individual's behalf.
3        (5) The time period to delete any of the individual's
4    health data may be extended once by an additional 45
5    calendar days when reasonably necessary, if the individual
6    is provided notice of the extension within the first
7    45-day period.
8        (6) Neither a regulated entity nor a processor shall
9    be required to comply with an individual's request to
10    delete the individual's health data if it is necessary for
11    the regulated entity or the processor to maintain the
12    individual's health data to:
13            (A) provide a product, service, or service feature
14        to the individual to whom the health data pertains
15        when requested by that individual. In such cases, the
16        regulated entity shall confirm whether the individual
17        wishes the request for deletion to be treated as a
18        request to terminate the associated product, service,
19        or feature;
20            (B) execute or complete a financial or commercial
21        transaction, or to fulfill an order for a specific
22        product, good, or service requested by an individual
23        to whom the individual health data pertains,
24        including, but not limited to, associated routine
25        administrative, operational, and account-servicing
26        activity, such as billing, shipping, storage, and

 

 

10400SB3222ham001- 25 -LRB104 19119 BAB 38481 a

1        accounting, or otherwise fulfill the requirements of
2        an agreement between the regulated entity and the
3        individual;
4            (C) prevent, detect, protect against, or respond
5        to a security incident, identity theft, fraud,
6        harassment, malicious or deceptive activities, or
7        activities that are illegal under the laws of this
8        State, or investigate, report, or prosecute those
9        responsible for any such activity;
10            (D) comply with an obligation under a law of this
11        State or federal law, including any applicable data
12        retention requirements in accordance with State and
13        federal law, including the data retention requirements
14        set forth in Section 6 of the Hospital Licensing Act,
15        45 CFR 164.316, and 45 CFR 164.530;
16            (E) engage in public or peer-reviewed scientific,
17        historical, or statistical research in the public
18        interest that adheres to all other applicable ethics
19        and privacy laws, if the regulated entity's or
20        processor's deletion of the information is likely to
21        render impossible or seriously impair the achievement
22        of such research and if the individual has provided
23        consent to such use of the individual's health data;
24            (F) comply with any applicable data retention
25        requirements in accordance with State and federal law,
26        including the data retention requirements set forth in

 

 

10400SB3222ham001- 26 -LRB104 19119 BAB 38481 a

1        Section 6 of the Hospital Licensing Act, 45 CFR
2        164.316, and 45 CFR 164.530; or
3            (G) investigate, establish, exercise, prepare for,
4        or defend legal claims.
5    (d) An individual may exercise rights under this Section
6by submitting a request to a regulated entity using the method
7the regulated entity specifies in the privacy policy under
8paragraph (10) of subsection (a) of Section 10.
9    (e) A regulated entity shall not engage in discriminatory
10practices against an individual solely because the individual
11has not provided consent to the sale or processing of the
12individual's health data pursuant to this Act or has exercised
13any other rights provided by this Act or guaranteed by law.
14Discriminatory practices include, but are not limited to:
15        (1) denying goods or services to the individual;
16        (2) imposing additional requirements or restrictions
17    on the individual that would not be necessary if the
18    individual provided consent;
19        (3) providing materially different treatment to
20    individuals who provide consent, as compared to
21    individuals who do not provide consent;
22        (4) providing or suggesting that the individual will
23    receive a lower level or quality of goods or services.
24    For the purposes of this subsection, discriminatory
25practices do not prohibit a regulated entity from suggesting
26that the individual will receive a different price or rate for

 

 

10400SB3222ham001- 27 -LRB104 19119 BAB 38481 a

1goods or services or charging different prices or rates for
2goods or services, including using discounts or other
3benefits, when done in connection with an individual's
4voluntary participation in a bona fide loyalty, rewards,
5premium features, discounts, or club card program.
 
6    Section 30. Processors.
7    (a) A processor may process an individual's health data
8only pursuant to a binding contract between the processor and
9the regulated entity that sets forth the processing
10instructions and limits the actions the processor may take
11with respect to the individual health data it processes on
12behalf of the regulated entity. A processor may process
13individual health data only in a manner that is consistent
14with the binding instructions set forth in the contract with
15the regulated entity.
16    (b) A processor shall assist the regulated entity using
17appropriate technical and organizational measures, whenever
18possible, in fulfilling the regulated entity's obligations
19under this Act.
20    (c) If a processor fails to adhere to the regulated
21entity's instructions or processes individual health data in a
22manner that is outside the scope of the processor's contract
23with the regulated entity, the processor is considered a
24regulated entity with regard to such data and is subject to all
25the requirements of this Act with regard to such data.

 

 

10400SB3222ham001- 28 -LRB104 19119 BAB 38481 a

1    (d) Determining whether a person is acting as a regulated
2entity or processor with respect to a specific processing of
3health data is a fact-based determination that depends upon
4the context in which health data is to be processed. A
5processor that continues to adhere to a regulated entity's
6instructions with respect to a specific processing of health
7data remains a processor.
8    (e) A regulated entity or processor that discloses health
9data to a processor or third party in accordance with this Act
10shall not be liable under this Act if the processor or third
11party receiving the health data violates this Act, so long as
12the disclosing regulated entity or processor did not have
13actual knowledge that the receiving processor or third-party
14controller would violate this Act. A third party or processor
15receiving personal data from a regulated entity or processor
16in compliance with this Act is not liable under this Act for
17violations committed by the regulated entity or processor that
18disclosed the health data.
 
19    Section 35. Authentication of an individual's identity.
20    (a) A regulated entity that receives an individual's
21request to confirm or delete may take reasonable measures to
22authenticate the individual's identity, or authorized agent's
23identity, to a reasonably high degree of certainty. A
24reasonably high degree of certainty may include matching at
25least 3 pieces of personal information provided by the

 

 

10400SB3222ham001- 29 -LRB104 19119 BAB 38481 a

1individual, or the individual's authorized agent, with
2personal information maintained by the regulated entity that
3the regulated entity has determined to be reliable for the
4purpose of authenticating the individual, or the individual's
5authorized agent, together with a signed declaration under
6penalty of perjury that the individual or the individual's
7authorized agent making the request is the individual or the
8individual's authorized agent whose health data is the subject
9of the request. If a regulated entity uses this method for
10authentication, the regulated entity shall make all forms
11necessary for authentication of an individual's or the
12individual's authorized agent's identity available to the
13individual or the individual's authorized agent and shall
14maintain all signed declarations as part of its recordkeeping
15obligations.
16    (b) A regulated entity is not required to comply with an
17individual's or the individual's authorized agent's request to
18confirm or delete if the regulated entity, using commercially
19reasonable efforts, is unable to authenticate the identity of
20the individual or the individual's authorized agent making the
21request. If a regulated entity is unable to authenticate the
22individual's or the individual's authorized agent's identity,
23the regulated entity shall inform the individual or the
24individual's authorized agent that it was unable to
25authenticate the individual's or the individual's authorized
26agent's identity and advise the individual or the individual's

 

 

10400SB3222ham001- 30 -LRB104 19119 BAB 38481 a

1authorized agent of other methods, if available, of
2authenticating the individual's or the individual's authorized
3agent's identity.
4    (c) If a regulated entity denies an authenticated
5individual's request to delete that individual's health data,
6in whole or in part, because of a conflict with federal or
7State law, the regulated entity shall inform the requesting
8individual and explain the basis for the denial, unless
9prohibited from doing so by law.
10    (d) Any information provided by an individual or the
11individual's authorized agent to a regulated entity for the
12purpose of authenticating the individual's or the individual's
13authorized agent's identity shall not be used for any purpose
14other than authenticating the individual's identity and shall
15be destroyed immediately following the authentication process.
 
16    Section 40. Individual health data security and
17minimization.
18    (a) A regulated entity shall restrict access to health
19data to only the employees, processors, and contractors,
20subcontractors, agents, and third parties of the regulated
21entity for whom access is necessary to provide a product or
22service that the individual to whom the health data relates
23has requested from the regulated entity.
24    (b) A regulated entity shall establish, implement, and
25maintain administrative, technical, and physical data security

 

 

10400SB3222ham001- 31 -LRB104 19119 BAB 38481 a

1practices that at least satisfy a reasonable standard of care
2within the regulated entity's industry to protect the
3confidentiality, integrity, and accessibility of health data
4appropriate to the volume and nature of the personal data at
5issue.
6    (c) A regulated entity in possession of deidentified data
7shall:
8        (1) take reasonable measures to ensure that such data
9    cannot be associated with an individual;
10        (2) publicly commit to process such data only in a
11    deidentified fashion and not attempt to reidentify such
12    data; and
13        (3) contractually obligate any recipients of such data
14    to satisfy the criteria set forth in items (1) and (2).
 
15    Section 45. Prohibition on geofencing. It is unlawful for
16a regulated entity to implement a geofence around any entity
17that provides in-person health care services and products
18where the geofence is used to:
19        (1) identify or track individuals seeking health care
20    services or products, or to determine whether the
21    individual is seeking health care services or products; or
22        (2) collect data from an individual who enters the
23    virtual perimeter.
 
24    Section 50. Limits on access to an individual's health

 

 

10400SB3222ham001- 32 -LRB104 19119 BAB 38481 a

1information by government agencies, officials, and law
2enforcement.
3    (a) A regulated entity shall not disclose an individual's
4health data to a federal, State, or local governmental agency,
5official, or law enforcement agent or agency unless: (1)
6disclosure is requested by the individual to whom the health
7data pertains or (2) the governmental entity or official
8serves the regulated entity with a valid warrant, except as
9prohibited under the laws of this State, including, but not
10limited to, Section 3.5 of the Uniform Interstate Depositions
11and Discovery Act.
12    (b) A regulated entity shall not collect, sell, share,
13allow access to, or disclose an individual's health data to
14any state or local jurisdiction for the purpose of
15investigating or enforcing a law that denies or interferes
16with an individual's right to obtain any lawful health care
17services as defined by the Lawful Health Care Activity Act.
 
18    Section 55. Private right of action. Any person aggrieved
19by a violation of this Act shall have a right of action in a
20State circuit court or as a supplemental claim in federal
21district court against an offending party. A prevailing party
22may recover for each violation:
23        (1) against any offending party that negligently
24    violates a provision of this Act, damages in the amount of
25    $1,000 or compensatory damages, whichever is greater;

 

 

10400SB3222ham001- 33 -LRB104 19119 BAB 38481 a

1        (2) against any offending party that intentionally or
2    recklessly violates a provision of this Act, damages in
3    the amount of $5,000 or compensatory damages, whichever is
4    greater;
5        (3) reasonable attorney's fees and costs, including
6    expert witness fees and other litigation expenses; and
7        (4) other relief, including an injunction, as the
8    State or federal court may deem appropriate.
 
9    Section 60. Enforcement by the Attorney General. The
10Attorney General may enforce a violation of this Act as an
11unlawful practice under the Consumer Fraud and Deceptive
12Business Practices Act. All rights and remedies provided by
13the Attorney General under the Consumer Fraud and Deceptive
14Business Practices Act shall be available for enforcement of a
15violation of this Act.
 
16    Section 65. Conflicts with other laws.
17    (a) Nothing in this Act shall be construed to prohibit the
18lawful and authorized disclosure of health data by regulated
19entities to local health departments or State government
20agencies or by or among local health departments and State
21government agencies as may be required by State and federal
22law, including under the Adult Protective Services Act, the
23Abused and Neglected Child Reporting Act, the Criminal Code of
242012, and the Disclosure of Offenses Against Children Act.

 

 

10400SB3222ham001- 34 -LRB104 19119 BAB 38481 a

1    (b) This Act shall not be construed to conflict with, or
2limit the application of, any of the following laws, rules, or
3regulations governing the sharing, collection, processing, or
4disclosure of personal information or health data: the Medical
5Patient Rights Act; the Hospital Licensing Act; Sections 2, 4,
65, 6, 7, 8, 9, 9.3, 9.8, and 11 of the Mental Health and
7Developmental Disabilities Confidentiality Act; subsections
8(c) through (f) of Section 10 of the Mental Health and
9Developmental Disabilities Confidentiality Act; and Sections
108-2001 and 8-2001.5 of the Code of Civil Procedure.
11    (c) In the event of a conflict between the provisions of
12this Act and any other law, rule, or regulation listed in
13subsection (b), the law, rule, or regulation that provides the
14greater right, benefit, or protection to individuals shall
15apply. Nothing in this Act shall be construed to diminish or
16limit any rights, benefits, or protections afforded under the
17laws, rules, or regulations referenced in subsection (b).
 
18    Section 70. Exemptions.
19    (a) This Act shall not apply to:
20        (1) information that meets the definition of:
21            (A) protected health information, as defined by,
22        and for purposes of the Health Insurance Portability
23        and Accountability Act of 1996, Public Law 104-191,
24        and related regulations;
25            (B) patient identifying information collected,

 

 

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1        used, or disclosed in accordance with 42 CFR Part 2,
2        established pursuant to 42 U.S.C. 290dd-2;
3            (C)(i) identifiable private information for
4        purposes of the federal policy for the protection of
5        human subjects, 45 CFR Part 46;
6            (ii) identifiable private information that is
7        otherwise information collected as part of human
8        subjects research pursuant to the Good Clinical
9        Practice guidelines issued by the International
10        Council for Harmonisation of Technical Requirements
11        for Pharmaceuticals for Human Use;
12            (iii) the protection of human subjects under 21
13        CFR Parts 50 and 56; or
14            (iv) personal data used or shared in research
15        conducted in accordance with one or more of the
16        requirements set forth in this subparagraph (C);
17            (D) information and documents created for purposes
18        of the federal Health Care Quality Improvement Act of
19        1986, Public Law 99-660, and related regulations;
20            (E) patient safety work product for purposes of 42
21        CFR Part 3, established pursuant to 42 U.S.C. 299b-21
22        through 42 U.S.C. 299b-26; or
23            (F) information that is deidentified in accordance
24        with the requirements for deidentification set forth
25        in 45 CFR Part 164, and derived from any of the health
26        care-related information listed under this paragraph;

 

 

10400SB3222ham001- 36 -LRB104 19119 BAB 38481 a

1        (2) information originating from and intermingled to
2    be indistinguishable with information under paragraph (1)
3    that is maintained by:
4            (A) a covered entity or a business associate, as
5        defined in 45 CFR 160.103, subject to and in
6        substantial compliance with the Health Insurance
7        Portability and Accountability Act of 1996, Public Law
8        104-191, and to the extent such entity is acting as a
9        covered entity or business associate under the Privacy
10        and Security rules issued by the United States
11        Department of Health and Human Services, Parts 160 and
12        164 of Title 45 of the Code of Federal Regulations;
13            (B) a health care facility, including a private
14        hospital, clinic, center, medical school, medical
15        training institution, laboratory or diagnostic
16        facility, physician's office, infirmary, dispensary,
17        ambulatory surgical treatment center, or other
18        institution or location wherein health care services
19        are provided to any person, including physician
20        organizations and associations, networks, joint
21        ventures, and all other combinations of those
22        organizations;
23            (C) a health care provider, including a physician,
24        hospital facility, or other person that is licensed or
25        otherwise authorized to deliver health care services;
26        or

 

 

10400SB3222ham001- 37 -LRB104 19119 BAB 38481 a

1            (D) a program or a qualified service organization
2        as defined in 42 CFR 2.11; or
3        (3) information used only for public health activities
4    and purposes as described in 45 CFR 164.512 or that is part
5    of a limited data set, as defined in 45 CFR 164.514, and is
6    used, disclosed, and maintained in the manner required, by
7    45 CFR 164.514.
8    (b) Personal information that is governed by and
9collected, used, or disclosed pursuant to the following laws
10or regulations is exempt from this Act: (1) the
11Gramm-Leach-Bliley Act, 15 U.S.C. 6801 et seq., and
12implementing regulations; (2) Part C of Title XI of the Social
13Security Act, 42 U.S.C. 1320d et seq.; (3) The Fair Credit
14Reporting Act, 15 U.S.C. 1681 et seq.; (4) the Family
15Educational Rights and Privacy Act, 20 U.S.C. 1232g; Part 99
16of Title 34 of the Code of Federal Regulations; or (5) the
17Insurance Information and Privacy Protection Article of the
18Illinois Insurance Code, the Insurance Data Security Law, and
19any corresponding privacy protection rules adopted by the
20Department of Insurance.
 
21    Section 97. Severability. The provisions of this Act are
22severable under Section 1.31 of the Statute on Statutes.
 
23    Section 500. The Consumer Fraud and Deceptive Business
24Practices Act is amended by adding Section 2MMMM as follows:
 

 

 

10400SB3222ham001- 38 -LRB104 19119 BAB 38481 a

1    (815 ILCS 505/2MMMM new)
2    Sec. 2MMMM. Violations of the Protect Health Data Privacy
3Act. Only for purposes of enforcing Section 60 of the Protect
4Health Data Privacy Act, any person who violates the Protect
5Health Data Privacy Act commits an unlawful practice within
6the meaning of this Act.
 
7    Section 999. Effective date. This Act takes effect August
81, 2027, except that Section 55 takes effect February 1,
92028.".