104TH GENERAL ASSEMBLY
State of Illinois
2025 and 2026
SB2994

 

Introduced 1/27/2026, by Sen. Rachel Ventura

 

SYNOPSIS AS INTRODUCED:
 
410 ILCS 513/5
410 ILCS 513/10
410 ILCS 513/20
410 ILCS 513/25
410 ILCS 513/27 new
410 ILCS 513/40
410 ILCS 513/50

    Amends the Genetic Information Privacy Act. Adds legislative findings. Defines "neurotechnology" and "neurotechnology data". Prohibits insurers from using genetic testing or neurotechnology data (rather than only genetic testing) for nontherapeutic purposes or underwriting, with limited exceptions. Prohibits employers, employment agencies, labor organizations, and licensing agencies from requesting, requiring, or using neurotechnology data in employment decisions, subject to specified exceptions. Adds new provisions governing confidentiality, consent, privacy policies, and security requirements for entities collecting neurotechnology data. Regulates disclosure to government agencies and sets conditions for clinical research. Makes conforming changes. Effective January 1, 2027.


LRB104 17867 BDA 31303 b

 

 

A BILL FOR

 

SB2994LRB104 17867 BDA 31303 b

1    AN ACT concerning health.
 
2    Be it enacted by the People of the State of Illinois,
3represented in the General Assembly:
 
4    Section 5. The Genetic Information Privacy Act is amended
5by changing Sections 5, 10, 20, 25, 40, and 50 and by adding
6Section 27 as follows:
 
7    (410 ILCS 513/5)
8    Sec. 5. Legislative findings; intent. The General Assembly
9finds that:
10    (a)(1) The use of genetic testing can be valuable to an
11individual.
12    (2) Despite existing laws, regulations, and professional
13standards which require or promote voluntary and confidential
14use of genetic testing information, many members of the public
15are deterred from seeking genetic testing because of fear that
16test results will be disclosed without consent in a manner not
17permitted by law or will be used in a discriminatory manner.
18    (3) The public health will be served by facilitating
19voluntary and confidential nondiscriminatory use of genetic
20testing information.
21    (4) The use of electronic health record systems and the
22exchange of patient records, both paper and electronic,
23through secure means, including through secure health

 

 

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1information exchanges, should be encouraged to improve patient
2health care and care coordination, facilitate public health
3reporting, and control health care costs, among other
4purposes.
5    (5) Limiting the use or disclosure of, and requests for,
6protected health information to the minimum necessary to
7accomplish an intended purpose, when being transmitted by or
8on behalf of a covered entity under HIPAA, is a key component
9of health information privacy. The disclosure of genetic
10information, when allowed by this Act, shall be performed in
11accordance with the minimum necessary standard when required
12under HIPAA.
13    (b)(1) Ongoing advances in technology have produced
14exponential growth in the volume and variety of personal data
15being generated, collected, stored, and analyzed, and these
16advances present both great promise and potential risks.
17    (2) Technology that collects data about the user's bodily
18and mental functions is transforming the volume and
19sensitivity of personal data collected from individuals and
20stored by companies.
21    (3) Neurotechnologies, including devices capable of
22recording, interpreting, and altering the response of an
23individual's central or peripheral nervous system to its
24internal or external environment, raise particularly pressing
25privacy concerns given their ability to monitor, decode, and
26manipulate brain activity.

 

 

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1    (4) Data concerning the activity of the human brain and
2wider nervous systems, or "neurotechnology data", is extremely
3sensitive and can reveal intimate information about
4individuals, including information about health, mental
5states, emotions, and cognitive functioning.
6    (5) Each human brain is unique, meaning that neural data
7is specific to the individual from whom it is collected.
8Because neurotechnology data contains distinctive information
9about the structure and functioning of individual brains and
10nervous systems, it contains sensitive information that may
11link the data to an identified or identifiable individual.
12    (6) The collection of neurotechnology data involves the
13involuntary disclosure of information. Even if individuals
14consent to the collection and processing of their data for
15narrow use, they are unlikely to be fully aware of the content
16or quality of information they are sharing.
17    (7) Neurotechnology users cannot decide what specific
18neurotechnology information they would like to disclose, and
19they are unlikely to understand the extent to which their
20neurotechnology data can be decoded, currently or in the
21future. Neurotechnologies can collect and process information
22about an individual that the individual did not even know
23existed.
24    (8) Neurotechnologies that are deployed in medical
25settings or otherwise utilize the surgical implantation of
26invasive devices are typically regulated as medical tools that

 

 

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1produce health information. Both invasive and noninvasive
2wearable neurotechnologies used in medical settings are also
3regulated by health data privacy laws. However, when
4noninvasive neurotechnologies are used outside of medical
5settings, they are generally considered consumer products and
6operate without regulation or data protection standards.
7(Source: P.A. 98-1046, eff. 1-1-15.)
 
8    (410 ILCS 513/10)
9    Sec. 10. Definitions. As used in this Act:
10    "Business associate" has the meaning ascribed to it under
11HIPAA, as specified in 45 CFR 160.103.
12    "Covered entity" has the meaning ascribed to it under
13HIPAA, as specified in 45 CFR 160.103.
14    "De-identified information" means health information that
15is not individually identifiable as described under HIPAA, as
16specified in 45 CFR 164.514(b).
17    "Disclosure" has the meaning ascribed to it under HIPAA,
18as specified in 45 CFR 160.103.
19    "Employer" means the State of Illinois, any unit of local
20government, and any board, commission, department,
21institution, or school district, any party to a public
22contract, any joint apprenticeship or training committee
23within the State, and every other person employing employees
24within the State.
25    "Employment agency" means both public and private

 

 

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1employment agencies and any person, labor organization, or
2labor union having a hiring hall or hiring office regularly
3undertaking, with or without compensation, to procure
4opportunities to work, or to procure, recruit, refer, or place
5employees.
6    "Family member" means, with respect to an individual, (i)
7the spouse of the individual; (ii) a dependent child of the
8individual, including a child who is born to or placed for
9adoption with the individual; (iii) any other person
10qualifying as a covered dependent under a managed care plan;
11and (iv) all other individuals related by blood or law to the
12individual or the spouse or child described in subsections (i)
13through (iii) of this definition.
14    "Genetic information" has the meaning ascribed to it under
15HIPAA, as specified in 45 CFR 160.103.
16    "Genetic monitoring" means the periodic examination of
17employees to evaluate acquired modifications to their genetic
18material, such as chromosomal damage or evidence of increased
19occurrence of mutations that may have developed in the course
20of employment due to exposure to toxic substances in the
21workplace in order to identify, evaluate, and respond to
22effects of or control adverse environmental exposures in the
23workplace.
24    "Genetic services" has the meaning ascribed to it under
25HIPAA, as specified in 45 CFR 160.103.
26    "Genetic testing" and "genetic test" have the meaning

 

 

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1ascribed to "genetic test" under HIPAA, as specified in 45 CFR
2160.103. "Genetic testing" includes direct-to-consumer
3commercial genetic testing.
4    "Health care operations" has the meaning ascribed to it
5under HIPAA, as specified in 45 CFR 164.501.
6    "Health care professional" means (i) a licensed physician,
7(ii) a licensed physician assistant, (iii) a licensed advanced
8practice registered nurse, (iv) a licensed dentist, (v) a
9licensed podiatric physician, (vi) a licensed genetic
10counselor, or (vii) an individual certified to provide genetic
11testing by a state or local public health department.
12    "Health care provider" has the meaning ascribed to it
13under HIPAA, as specified in 45 CFR 160.103.
14    "Health facility" means a hospital, blood bank, blood
15center, sperm bank, or other health care institution,
16including any "health facility" as that term is defined in the
17Illinois Finance Authority Act.
18    "Health information exchange" or "HIE" means a health
19information exchange or health information organization that
20exchanges health information electronically. In certain
21circumstances, in accordance with HIPAA, an HIE will be a
22business associate.
23    "Health oversight agency" has the meaning ascribed to it
24under HIPAA, as specified in 45 CFR 164.501.
25    "HIPAA" means the Health Insurance Portability and
26Accountability Act of 1996, Public Law 104-191, as amended by

 

 

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1the Health Information Technology for Economic and Clinical
2Health Act of 2009, Public Law 111-05, and any subsequent
3amendments thereto and any regulations promulgated thereunder.
4    "Insurer" means (i) an entity that is subject to the
5jurisdiction of the Director of Insurance and (ii) a managed
6care plan.
7    "Labor organization" includes any organization, labor
8union, craft union, or any voluntary unincorporated
9association designed to further the cause of the rights of
10union labor that is constituted for the purpose, in whole or in
11part, of collective bargaining or of dealing with employers
12concerning grievances, terms or conditions of employment, or
13apprenticeships or applications for apprenticeships, or of
14other mutual aid or protection in connection with employment,
15including apprenticeships or applications for apprenticeships.
16    "Licensing agency" means a board, commission, committee,
17council, department, or officers, except a judicial officer,
18in this State or any political subdivision authorized to
19grant, deny, renew, revoke, suspend, annul, withdraw, or amend
20a license or certificate of registration.
21    "Limited data set" has the meaning ascribed to it under
22HIPAA, as described in 45 CFR 164.514(e)(2).
23    "Managed care plan" means a plan that establishes,
24operates, or maintains a network of health care providers that
25have entered into agreements with the plan to provide health
26care services to enrollees where the plan has the ultimate and

 

 

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1direct contractual obligation to the enrollee to arrange for
2the provision of or pay for services through:
3        (1) organizational arrangements for ongoing quality
4    assurance, utilization review programs, or dispute
5    resolution; or
6        (2) financial incentives for persons enrolled in the
7    plan to use the participating providers and procedures
8    covered by the plan.
9    A managed care plan may be established or operated by any
10entity including a licensed insurance company, hospital or
11medical service plan, health maintenance organization, limited
12health service organization, preferred provider organization,
13third party administrator, or an employer or employee
14organization.
15    "Minimum necessary" means HIPAA's standard for using,
16disclosing, and requesting protected health information found
17in 45 CFR 164.502(b) and 164.514(d).
18    "Neurotechnology" means devices capable of recording,
19interpreting, or altering the response of an individual's
20central or peripheral nervous system to its internal or
21external environment. "Neurotechnology" includes mental
22augmentation or improving human cognition and behavior through
23direct recording or manipulation of neural activity by
24neurotechnology.
25    "Neurotechnology data" means information that is captured
26by neurotechnologies, that is generated by measuring the

 

 

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1activity of an individual's central or peripheral nervous
2systems, or that is data associated with neural activity, the
3activity of neurons or glial cells in the central or
4peripheral nervous system. "Neurotechnology data" does not
5include nonneural information, such as pupil dilation, motor
6activity, breathing rate, or other information about the
7downstream physical effects of neural activity.
8    "Nontherapeutic purpose" means a purpose that is not
9intended to improve or preserve the life or health of the
10individual whom the information concerns.
11    "Organized health care arrangement" has the meaning
12ascribed to it under HIPAA, as specified in 45 CFR 160.103.
13    "Patient safety activities" has the meaning ascribed to it
14under 42 CFR 3.20.
15    "Payment" has the meaning ascribed to it under HIPAA, as
16specified in 45 CFR 164.501.
17    "Person" includes any natural person, partnership,
18association, joint venture, trust, governmental entity, public
19or private corporation, health facility, or other legal
20entity.
21    "Protected health information" has the meaning ascribed to
22it under HIPAA, as specified in 45 CFR 164.103.
23    "Research" has the meaning ascribed to it under HIPAA, as
24specified in 45 CFR 164.501.
25    "State agency" means an instrumentality of the State of
26Illinois and any instrumentality of another state which

 

 

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1pursuant to applicable law or a written undertaking with an
2instrumentality of the State of Illinois is bound to protect
3the privacy of genetic information of Illinois persons.
4    "Treatment" has the meaning ascribed to it under HIPAA, as
5specified in 45 CFR 164.501.
6    "Use" has the meaning ascribed to it under HIPAA, as
7specified in 45 CFR 160.103, where context dictates.
8(Source: P.A. 103-508, eff. 8-4-23; 104-417, eff. 8-15-25.)
 
9    (410 ILCS 513/20)
10    Sec. 20. Use of genetic testing information or
11neurotechnology data for insurance purposes.
12    (a) An insurer may not seek information derived from
13genetic testing or neurotechnology data for use in connection
14with a policy of accident and health insurance. Except as
15provided in subsection (c), an insurer that receives
16information derived from genetic testing or neurotechnology
17data, regardless of the source of that information, may not
18use the information for a nontherapeutic purpose as it relates
19to a policy of accident and health insurance.
20    (b) An insurer shall not use or disclose protected health
21information that is genetic information or neurotechnology
22data for underwriting purposes. For purposes of this Section,
23"underwriting purposes" means, with respect to an insurer:
24        (1) rules for, or determination of, eligibility
25    (including enrollment and continued eligibility) for, or

 

 

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1    determination of, benefits under the plan, coverage, or
2    policy (including changes in deductibles or other
3    cost-sharing mechanisms in return for activities such as
4    completing a health risk assessment or participating in a
5    wellness program);
6        (2) the computation of premium or contribution amounts
7    under the plan, coverage, or policy (including discounts,
8    rebates, payments in kind, or other premium differential
9    mechanisms in return for activities, such as completing a
10    health risk assessment or participating in a wellness
11    program);
12        (3) the application of any pre-existing condition
13    exclusion under the plan, coverage, or policy; and
14        (4) other activities related to the creation, renewal,
15    or replacement of a contract of health insurance or health
16    benefits.
17    "Underwriting purposes" does not include determinations of
18medical appropriateness where an individual seeks a benefit
19under the plan, coverage, or policy.
20    This subsection (b) does not apply to insurers that are
21issuing a long-term care policy, excluding a nursing home
22fixed indemnity plan.
23    (c) An insurer may consider the results of genetic testing
24or may consider neurotechnology data in connection with a
25policy of accident and health insurance if the individual
26voluntarily submits the results of genetic testing or

 

 

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1voluntarily submits neurotechnology data and if the results of
2genetic testing or the neurotechnology data are favorable to
3the individual.
4    (d) An insurer that possesses information derived from
5genetic testing or from neurotechnology data may not release
6the information to a third party, except as specified in this
7Act.
8    (e) A company providing direct-to-consumer commercial
9genetic testing or providing direct-to-consumer
10neurotechnology data is prohibited from sharing any genetic
11test information, neurotechnology data, or other personally
12identifiable information about a consumer with any health or
13life insurance company without written consent from the
14consumer.
15(Source: P.A. 101-132, eff. 1-1-20.)
 
16    (410 ILCS 513/25)
17    Sec. 25. Use of genetic testing information or
18neurotechnology data by employers.
19    (a) An employer, employment agency, labor organization,
20and licensing agency shall treat genetic testing and genetic
21information in such a manner that is consistent with the
22requirements of federal law, including but not limited to the
23Genetic Information Nondiscrimination Act of 2008, the
24Americans with Disabilities Act, Title VII of the Civil Rights
25Act of 1964, the Family and Medical Leave Act of 1993, the

 

 

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1Occupational Safety and Health Act of 1970, the Federal Mine
2Safety and Health Act of 1977, or the Atomic Energy Act of
31954.
4    (b) An employer may release genetic testing information or
5neurotechnology data only in accordance with this Act.
6    (c) An employer, employment agency, labor organization,
7and licensing agency shall not directly or indirectly do any
8of the following:
9        (1) solicit, request, require or purchase genetic
10    testing or genetic information of a person or a family
11    member of the person, or administer a genetic test to a
12    person or a family member of the person as a condition of
13    employment, preemployment application, labor organization
14    membership, or licensure;
15        (2) solicit, request, require, or purchase
16    neurotechnology data of a person or a family member of a
17    person, or require the person or family member of the
18    person to use a neurotechnology, as a condition of
19    employment, preemployment application, labor organization
20    membership, or licensure;
21        (3) (2) affect the terms, conditions, or privileges of
22    employment, preemployment application, labor organization
23    membership, or licensure, or terminate the employment,
24    labor organization membership, or licensure of any person
25    because of genetic testing, or genetic information, or
26    neurotechnology data with respect to the employee or

 

 

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1    family member, or information about a request for or the
2    receipt of genetic testing or neurotechnology data by such
3    employee or family member of such employee;
4        (4) (3) limit, segregate, or classify employees in any
5    way that would deprive or tend to deprive any employee of
6    employment opportunities or otherwise adversely affect the
7    status of the employee as an employee because of genetic
8    testing, or genetic information, or neurotechnology data
9    with respect to the employee or a family member, or
10    information about a request for or the receipt of genetic
11    testing, or genetic information, or neurotechnology data
12    by such employee or family member of such employee; and
13        (5) (4) retaliate through discharge or in any other
14    manner against any person alleging a violation of this Act
15    or participating in any manner in a proceeding under this
16    Act.
17    (d) An agreement between a person and an employer,
18prospective employer, employment agency, labor organization,
19or licensing agency, or its employees, agents, or members
20offering the person employment, labor organization membership,
21licensure, or any pay or benefit in return for taking a genetic
22test or using a neurotechnology is prohibited.
23    (e) An employer shall not use genetic information, or
24genetic testing, or neurotechnology data in furtherance of a
25workplace wellness program benefiting employees unless (1)
26health services, or genetic services, or neurotechnology

 

 

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1services are offered by the employer, (2) the employee
2provides written authorization in accordance with Section 27
3or 30 of this Act, as it may apply, (3) only the employee or
4family member if the family member is receiving genetic
5neurotechnology data services and the licensed health care
6professional or licensed genetic counselor involved in
7providing such services receive individually identifiable
8information concerning the results of such services, and (4)
9any individually identifiable information is only available
10for purposes of such services and shall not be disclosed to the
11employer except in aggregate terms that do not disclose the
12identity of specific employees. An employer shall not penalize
13an employee who does not disclose his or her genetic
14information or neurotechnology data or does not choose to
15participate in a program requiring disclosure of the
16employee's genetic information or neurotechnology data.
17    (f) Nothing in this Act shall be construed to prohibit
18genetic testing of an employee who requests a genetic test and
19who provides written authorization, in accordance with Section
2030 of this Act, from taking a genetic test for the purpose of
21initiating a workers' compensation claim under the Workers'
22Compensation Act.
23    (g) A purchase of commercially and publicly available
24documents, including newspapers, magazines, periodicals, and
25books but not including medical databases, or court records,
26or consumer neurotechnology databases or inadvertently

 

 

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1requesting family medical history by an employer, employment
2agency, labor organization, and licensing agency does not
3violate this Act.
4    (h) Nothing in this Act shall be construed to prohibit an
5employer that conducts DNA analysis for law enforcement
6purposes as a forensic laboratory and that includes such
7analysis in the Combined DNA Index System pursuant to the
8federal Violent Crime Control and Law Enforcement Act of 1994
9from requesting or requiring genetic testing or genetic
10information of such employer's employees, but only to the
11extent that such genetic testing or genetic information is
12used for analysis of DNA identification markers for quality
13control to detect sample contamination.
14    (i) Nothing in this Act shall be construed to prohibit an
15employer from requesting or requiring genetic information or
16neurotechnology data to be used for genetic monitoring or
17other monitoring of the biological effects of toxic substances
18in the workplace, but only if (1) the employer provides
19written notice of the genetic monitoring or other monitoring
20to the employee; (2) the employee provides written
21authorization under Section 27 or 30 of this Act, as it may
22apply, or the genetic monitoring or other monitoring is
23required by federal or State law; (3) the employee is informed
24of individual monitoring results; (4) the monitoring is in
25compliance with any federal genetic monitoring regulations or
26State genetic monitoring regulations regarding genetic

 

 

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1monitoring or other monitoring under the authority of the
2federal Occupational Safety and Health Act of 1970; and (5)
3the employer, excluding any health care provider, health care
4professional, or health facility that is involved in the
5genetic monitoring or other monitoring program, receives the
6results of the monitoring only in aggregate terms that do not
7disclose the identity of specific employees.
8    (j) Despite lawful acquisition of genetic testing, or
9genetic information, or neurotechnology data under subsections
10(e) through (i) of this Section, an employer, employment
11agency, labor organization, and licensing agency still may not
12use or disclose the genetic test, or genetic information, or
13neurotechnology data in violation of this Act.
14    (k) Except as provided in subsections (e), (f), (h), and
15(i) of this Section, a person shall not knowingly sell to or
16interpret for an employer, employment agency, labor
17organization, or licensing agency, or its employees, agents,
18or members, a genetic test or neurotechnology data of an
19employee, labor organization member, or license holder, or of
20a prospective employee, member, or license holder.
21(Source: P.A. 100-396, eff. 1-1-18.)
 
22    (410 ILCS 513/27 new)
23    Sec. 27. Confidentiality of neurotechnology data.
24    (a) As used in this Section:
25    "Entity" means a partnership, corporation, association, or

 

 

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1public or private organization of any character that:
2        (1) offers consumer neurotechnology products or
3    services directly to a consumer; or
4        (2) collects, uses, or analyzes neurotechnology data.
5    "Government agency" means a State agency as defined under
6Section 1-7 of the Illinois State Auditing Act, a unit of local
7government, a school district, or any administrative unit or
8corporate outgrowth thereof.
9    "Processor" means a person that processes genetic data on
10behalf of an entity pursuant to a contract between the entity
11and the processor that prohibits the processor from retaining,
12using, or disclosing the neurotechnology data, or any
13information regarding the identity of the consumer, including
14whether that consumer has solicited or received
15neurotechnology, as applicable, for any purpose other than for
16the specific purpose of performing the services specified in
17the contract.
18    "Third party" means a person other than the consumer,
19entity, or processor.
20    (b) Except as otherwise provided in this Act,
21neurotechnology data and information derived from
22neurotechnology data is confidential and privileged and may be
23released only to the individual whose activity is measured or
24captured and to persons specifically authorized, in writing in
25accordance with this Section, by that individual to receive
26the information.

 

 

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1    (c) To safeguard the privacy, confidentiality, security,
2and integrity of an individual's neurotechnology data, an
3entity shall:
4        (1) provide clear and complete information regarding
5    the entity's policies and procedures for the collection,
6    use, or disclosure of neurotechnology data by making
7    available to a consumer:
8            (A) a high-level privacy policy overview that
9        includes basic, essential information about the
10        entity's collection, use, or disclosure of
11        neurotechnology data; and
12            (B) a prominent, publicly available privacy notice
13        that includes, at a minimum, information about the
14        entity's data collection, consent, use, access,
15        disclosure, transfer, security, and retention and
16        deletion practices for neurotechnology data;
17        (2) obtain initial express consent from a consumer,
18    parent, guardian, or power of attorney for the collection,
19    use, or disclosure of the consumer's neurotechnology data
20    that:
21            (A) clearly describes the entity's use of the
22        neurotechnology data that the entity collects through
23        the entity's neurotechnology product or service;
24            (B) specifies the categories of individuals within
25        the entity that have access to neurotechnology data;
26        and

 

 

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1            (C) specifies how the entity may share the
2        neurotechnology data;
3        (3) if the entity engages in any of the following,
4    obtain a consumer's:
5            (A) separate express consent for:
6                (i) the transfer or disclosure of the
7            consumer's neurotechnology data to any third party
8            other than the entity's processors, including the
9            name of the third party to which the consumer's
10            neurotechnology data will be transferred or
11            disclosed with the consumer's express consent;
12                (ii) the use of neurotechnology data beyond
13            the primary purpose of the entity's
14            neurotechnology product or service and inherent
15            contextual uses; or
16                (iii) the entity's retention of any
17            neurotechnology data provided by the consumer
18            following the entity's completion of the primary
19            purpose of the entity's neurotechnology requested
20            by the consumer;
21            (B) informed express consent for transfer or
22        disclosure of the consumer's neurotechnology data to
23        third party persons for:
24                (i) research purposes; or
25                (ii) research conducted under the control of
26            the entity for the purpose of publication or

 

 

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1            generalizable knowledge; and
2            (C) express consent for:
3                (i) marketing to a consumer based on the
4            consumer's neurotechnology data;
5                (ii) marketing by a third-party person to a
6            consumer based on the consumer having ordered or
7            purchased a neurotechnology product or service,
8            except that marketing under this subdivision (ii)
9            does not include the provision of customized
10            content or offers on the websites or through the
11            applications or services provided by the entity
12            with the first-party relationship to the consumer;
13            or
14                (iii) sale or other valuable consideration of
15            the consumer's neurotechnology data.
16        (4) comply with the provisions of subsection (d)
17    requiring a valid legal process for disclosing
18    neurotechnology data to law enforcement or any other
19    government agency without a consumer's express consent;
20        (5) develop, implement, and maintain a comprehensive
21    security program to protect a consumer's neurotechnology
22    data against unauthorized access, use, or disclosure; and
23        (6) provide a process for a consumer to:
24            (A) access the consumer's neurotechnology data;
25            (B) request and obtain the destruction of the
26        consumer's neurotechnology data; and

 

 

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1            (C) revoke any consent provided by the consumer.
2    (c-5) The requirements of paragraph (6) of subsection (c)
3shall be waived if:
4        (1) the entity obtains express and informed written
5    consent from a consumer, parent, guardian, or power of
6    attorney for participation in a clinical research trial,
7    including the collection and use of any neurotechnology
8    data, which at a minimum must:
9            (A) be in accordance with the good clinical
10        practice guideline issued by the international council
11        for harmonization of technical requirements for
12        pharmaceuticals for human use;
13            (B) be obtained no sooner than 14 days from the
14        initial neurotechnology data collection if the data is
15        collected for a primary purpose unrelated to clinical
16        research;
17            (C) be obtained separately from any other items of
18        consent;
19            (D) be in writing on a form with text that is
20        easily readable with size 12-point type font or
21        larger;
22            (E) include the entity's data retention, sharing,
23        and use policies; and
24            (F) include notice that after consent is given,
25        there is no right to access, inspect, or require the
26        destruction of any neurotechnology data;

 

 

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1        (2) the neurotechnology data is used for clinical
2    research purposes only.
3    (c-10) The requirements of subsection (c-5) supersede all
4exceptions to, and waivers of, informed consent in the federal
5policy for the protection of human subjects under 45 CFR Part
646, to the extent permitted by federal law. Neurotechnology
7data of Illinois residents collected in the State may not be
8stored within the territorial boundaries of any country
9currently sanctioned in any way by the United States office of
10foreign asset control or designated as a foreign adversary
11under 15 CFR 7.4(a). Neurotechnology data of Illinois
12residents collected in the State may only be transferred or
13stored outside the United States with the consent of the
14resident.
15    (d) Neurotechnology data use by government agencies is
16regulated as follows:
17        (1) Any collection, storage, use, or dissemination of
18    neurotechnology data by a government agency must be
19    performed in accordance with a specific State law or
20    executed through a search warrant or investigative
21    subpoena.
22        (2) A government agency may not obtain neurotechnology
23    search results from a consumer neurotechnology database:
24            (A) without a search warrant or investigative
25        subpoena issued by a court on a finding of probable
26        cause; or

 

 

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1            (B) unless the consumer whose information is
2        sought previously waived the consumer's right to
3        privacy in the information.
4        (3) A government agency that legally obtains
5    neurotechnology database search results, as set forth in
6    paragraph (2) of subsection (d), or neurotechnology data,
7    as set forth in this Section, may use the results during
8    criminal investigations and judicial proceedings subject
9    to applicable rules of criminal procedure and evidence.
10    (e) This Section does not apply to protected health
11information that is collected by a covered entity or business
12associate as those terms are defined in 45 CFR Parts 160 and
13164, if separate informed consent related to the collection,
14use, and dissemination of neurotechnology data is obtained
15from the consumer, parent, guardian, or power of attorney, and
16the covered entity or business associate follows the policies
17outlined in paragraph (6) of subsection (c).
 
18    (410 ILCS 513/40)
19    Sec. 40. Right of action.
20    (a) Any person aggrieved by a violation of this Act shall
21have a right of action in a State circuit court or as a
22supplemental claim in a federal district court against an
23offending party. A prevailing party may recover for each
24violation:
25        (1) Against any party who negligently violates a

 

 

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1    provision of this Act, liquidated damages of $2,500 or
2    actual damages, whichever is greater.
3        (2) Against any party who intentionally or recklessly
4    violates a provision of this Act, liquidated damages of
5    $15,000 or actual damages, whichever is greater.
6        (3) Reasonable attorney's fees and costs, including
7    expert witness fees and other litigation expenses.
8        (4) Such other relief, including an injunction, as the
9    State or federal court may deem appropriate.
10    (b) Article XL of the Illinois Insurance Code shall
11provide the exclusive remedy for violations of Section 30 by
12insurers.
13    (c) Notwithstanding any provisions of the law to the
14contrary, any person alleging a violation of subsection (a) of
15Section 15, subsection (b) of Section 25, Section 27, Section
1630, Section 31, or Section 35 of this Act shall have a right of
17action in a State circuit court or as a supplemental claim in a
18federal district court to seek a preliminary injunction
19preventing the release or disclosure of genetic testing, or
20genetic information, or neurotechnology data pending the final
21resolution of any action under this Act.
22(Source: P.A. 98-1046, eff. 1-1-15.)
 
23    (410 ILCS 513/50)
24    Sec. 50. Home rule. Any home rule unit of local
25government, any non-home rule municipality, or any non-home

 

 

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1rule county within the unincorporated territory of the county
2may enact ordinances, standards, rules, or regulations that
3protect genetic information, and genetic testing, and
4neurotechnology data in a manner or to an extent equal to or
5greater than the protection provided in this Act. This Section
6is a limitation on the concurrent exercise of home rule power
7under subsection (i) of Section 6 of Article VII of the
8Illinois Constitution.
9(Source: P.A. 95-927, eff. 1-1-09.)
 
10    Section 97. Severability. The provisions of this Act are
11severable under Section 1.31 of the Statute on Statutes.
 
12    Section 99. Effective date. This Act takes effect January
131, 2027.