2025 -- H 5857 | |
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LC002020 | |
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STATE OF RHODE ISLAND | |
IN GENERAL ASSEMBLY | |
JANUARY SESSION, A.D. 2025 | |
____________ | |
A N A C T | |
RELATING TO HEALTH AND SAFETY -- REPRODUCTIVE FREEDOM AND GENDER | |
AFFIRMING CARE HEALTH DATA PRIVACY ACT | |
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Introduced By: Representatives Knight, Speakman, Ajello, Cruz, Fogarty, Caldwell, | |
Date Introduced: February 28, 2025 | |
Referred To: House Health & Human Services | |
It is enacted by the General Assembly as follows: | |
1 | SECTION 1. Title 23 of the General Laws entitled "HEALTH AND SAFETY" is hereby |
2 | amended by adding thereto the following chapter: |
3 | CHAPTER 101.1 |
4 | REPRODUCTIVE FREEDOM AND GENDER-AFFIRMING CARE HEALTH DATA |
5 | PRIVACY ACT |
6 | 23-101.1-1. Title. |
7 | This act shall be known and may be cited as the “Reproductive Freedom and Gender- |
8 | Affirming Care Data Privacy Act.” |
9 | 23-101.1-2. Definitions. |
10 | As used in this chapter: |
11 | (1) "Abortion" means the termination of a pregnancy for purposes other than producing a |
12 | live birth. |
13 | (2) "Affiliate" means a legal entity that shares common branding with another legal entity |
14 | and controls, is controlled by, or is under common control with another legal entity. For the |
15 | purposes of this definition, "control" or "controlled" means: |
16 | (i) Ownership of, or the power to vote, more than fifty percent (50%) of the outstanding |
17 | shares of any class of voting security of a company; |
18 | (ii) Control in any manner over the election of a majority of the directors or of individuals |
| |
1 | exercising similar functions; or |
2 | (iii) The power to exercise controlling influence over the management of a company. |
3 | (3) "Authenticate" means to use reasonable means to determine that a request to exercise |
4 | any of the rights afforded in this chapter is being made by, or on behalf of, the consumer who is |
5 | entitled to exercise such consumer rights with respect to the consumer health data at issue. |
6 | (4) "Biometric data" means data that is generated from the measurement or technological |
7 | processing of an individual's physiological, biological, or behavioral characteristics and that |
8 | identifies a consumer, whether individually or in combination with other data. Biometric data |
9 | includes, but is not limited to: |
10 | (i) Imagery of the iris, retina, fingerprint, face, hand, palm, vein patterns, and voice |
11 | recordings, from which an identifier template can be extracted; or |
12 | (ii) Keystroke patterns or rhythms and gait patterns or rhythms that contain identifying |
13 | information. |
14 | (5) "Collect" means to buy, rent, access, retain, receive, acquire, infer, derive, or otherwise |
15 | process consumer health data in any manner, including receiving the data from the individual, either |
16 | actively or passively, or by observing or tracking the individual’s online activity or precise location. |
17 | (6)(i) "Consent" means a clear affirmative act that signifies a consumer's freely given, |
18 | specific, informed, opt-in, voluntary, and unambiguous agreement, which may include written |
19 | consent provided by electronic means, provided: |
20 | (A) The request is provided to the consumer in a clear and conspicuous stand-alone |
21 | disclosure; |
22 | (B) The request includes a description of the processing purpose for which the consumer’s |
23 | consent is sought and clearly states the specific categories of personal data that the regulated entity |
24 | intends to collect, process, or transfer; |
25 | (C) The request is made available to the consumer in each language in which the regulated |
26 | entity provides a product or service for which authorization is sought and, in a manner, reasonably |
27 | accessible to consumers with disabilities. |
28 | (ii) "Consent" may not be obtained by: |
29 | (A) A consumer's acceptance of a general or broad terms of use agreement or a similar |
30 | document that contains descriptions of personal data processing along with other unrelated |
31 | information; |
32 | (B) A consumer hovering over, muting, pausing, or closing a given piece of content; |
33 | (C) A consumer's agreement obtained through the use of deceptive designs; or, |
34 | (D) Inference from the inaction of a consumer or the consumer’s continued use of a service |
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1 | or product provided by the regulated entity. |
2 | (7) "Consumer" means a natural person who is: |
3 | (i) A Rhode Island resident, or a natural person whose consumer health data is collected |
4 | while present in Rhode Island; and |
5 | (ii) Is acting only in an individual or household context, however identified, including by |
6 | any unique identifier. "Consumer" does not include an individual acting in an employment context. |
7 | (8) "Consumer health data" means: |
8 | (i)(A) A consumer’s gender-affirming care information; |
9 | (B) A consumer’s reproductive or sexual health information; or |
10 | (ii) Any information that a regulated entity or a small business, or their respective |
11 | processor, processes to associate or identify a consumer with the data described in subsection (8)(i) |
12 | of this section that is derived or extrapolated from information that is not consumer health data to |
13 | include, but not limited to, as proxy, derivative, inferred, or emergent data by any means, including |
14 | algorithms or machine learning. |
15 | (iii) "Consumer health data" does not include personal information that is used to engage |
16 | in public or peer-reviewed scientific, historical, or statistical research in the public interest that |
17 | adheres to all other applicable ethics and privacy laws and is approved, monitored, and governed |
18 | by an institutional review board, human subjects research ethics review board, or a similar |
19 | independent oversight entity that determines that the regulated entity or the small business has |
20 | implemented reasonable safeguards to mitigate privacy risks associated with research, including |
21 | any risks associated with reidentification. |
22 | (9) "Deceptive design" means a user interface designed or manipulated with the effect of |
23 | subverting or impairing user autonomy, decision making, or choice. |
24 | (10) "Deidentified data" means data that cannot reasonably be used to infer information |
25 | about, or otherwise be linked to, an identified or identifiable consumer, or a device linked to such |
26 | consumer, if the regulated entity or the small business that possesses such data: |
27 | (i) Takes reasonable measures to ensure that such data cannot be associated with a |
28 | consumer; |
29 | (ii) Publicly commits to process such data only in a deidentified fashion and not attempt to |
30 | reidentify such data; and |
31 | (iii) Contractually obligates any recipients of such data to satisfy the criteria set forth in |
32 | this chapter. |
33 | (11) "Gender-affirming care information" means personal information relating to seeking |
34 | or obtaining past, present, or future gender-affirming care services. "Gender-affirming care |
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1 | information" includes, but is not limited to: |
2 | (i) Precise location information that could reasonably indicate a consumer's attempt to |
3 | acquire or receive gender-affirming care services; |
4 | (ii) Efforts to research or obtain gender-affirming care services; or |
5 | (iii) Any gender-affirming care information that is derived, extrapolated, or inferred, |
6 | including from information that is not consumer health data, such as proxy, derivative, inferred, |
7 | emergent, or algorithmic data. |
8 | (12) "Gender-affirming care services" means health services or products that support and |
9 | affirm an individual's gender identity including, but not limited to, psychological, behavioral, |
10 | cosmetic, medical, or surgical interventions. "Gender-affirming care services" includes, but is not |
11 | limited to, treatments for gender dysphoria, gender-affirming hormone therapy, and gender- |
12 | affirming surgical procedures. |
13 | (13) "Genetic data" means any data, regardless of its format, that concerns a consumer's |
14 | genetic characteristics. "Genetic data" includes, but is not limited to: |
15 | (i) Raw sequence data that result from the sequencing of a consumer's complete extracted |
16 | deoxyribonucleic acid (DNA) or a portion of the extracted DNA; |
17 | (ii) Genotypic and phenotypic information that results from analyzing the raw sequence |
18 | data; and |
19 | (iii) Self-reported health data that a consumer submits to a regulated entity or a small |
20 | business and that is analyzed in connection with consumer's raw sequence data. |
21 | (14) "Geofence" means technology that uses global positioning coordinates, cell tower |
22 | connectivity, cellular data, radio frequency identification, Wifi data, and/or any other form of |
23 | spatial or location detection to establish a virtual boundary around a specific physical location, or |
24 | to locate a consumer within a virtual boundary. For purposes of this definition, "geofence" means |
25 | a virtual boundary that is two thousand feet (2,000 ft.) or less from the perimeter of the physical |
26 | location. |
27 | (15) "Health care services" means any service provided to a person to assess, measure, |
28 | improve, or learn about a person's mental or physical health including, but not limited to: |
29 | (1) Individual health conditions, status, diseases, or diagnoses; |
30 | (ii) Psychological, behavioral, and medical interventions; |
31 | (iii) Health-related surgeries or procedures; |
32 | (iv) Use or purchase of medication; |
33 | (v) Bodily functions, vital signs, symptoms, or measurements of the information described |
34 | in this subsection; |
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1 | (vi) Diagnoses or diagnostic testing, treatment, or medication; |
2 | (vii) Reproductive health care services; or |
3 | (viii) Gender-affirming care services. |
4 | (16) "Homepage" means the introductory page of an Internet website and any Internet |
5 | webpage where personal information is collected. In the case of an online service, such as a mobile |
6 | application, homepage means the application's platform page or download page, and a link within |
7 | the application, such as from the application configuration, "about," "information," or settings page. |
8 | (17) "Person" means, where applicable, natural persons, corporations, trusts, |
9 | unincorporated associations, and partnerships. "Person" does not include government agencies, |
10 | tribal nations, or contracted service providers when processing consumer health data on behalf of |
11 | a government agency. |
12 | (18) "Personal information" means information that identifies or is reasonably capable of |
13 | being associated or linked, directly or indirectly, with a particular consumer. "Personal |
14 | information" includes, but is not limited to, data associated with a persistent unique identifier, such |
15 | as a cookie ID, an IP address, a device identifier, or any other form of persistent unique identifier. |
16 | "Personal information" does not include publicly available information or deidentified data. |
17 | (19) "Precise location information" means information derived from technology including, |
18 | but not limited to, global positioning system level latitude and longitude coordinates or other |
19 | mechanisms, that directly identifies the specific location of an individual with precision and |
20 | accuracy within a radius of one thousand seven hundred and fifty feet (1,750 ft.). "Precise location |
21 | information" does not include the content of communications, or any data generated by or |
22 | connected to advanced utility metering infrastructure systems or equipment for use by a utility. |
23 | (20) "Process" or "processing" means any operation or set of operations performed on |
24 | consumer health data. |
25 | (21) "Processor" means a person that processes consumer health data on behalf of a |
26 | regulated entity or a small business. |
27 | (22) "Publicly available information" means information that: |
28 | (i)(A) Is made available through federal, state, or municipal government records or widely |
29 | distributed media; |
30 | (B) Is released in a disclosure to the general public as required by federal, state, or local |
31 | law; or |
32 | (C) A regulated entity or a small business has a reasonable basis to believe a consumer has |
33 | made available in such a way that the consumer no longer maintains a reasonable expectation of |
34 | privacy in the information. |
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1 | (ii) "Publicly available information" does not include any biometric data collected about a |
2 | consumer by a business without the consumer's consent or publicly available information combined |
3 | or intermixed with personal information. |
4 | (23) "Regulated entity" means any legal entity that: |
5 | (i) Provides health care services in Rhode Island, or produces or provides health care |
6 | services that are targeted to consumers in Rhode Island; |
7 | (ii) Alone or jointly with others, determines the purpose and means of collecting, |
8 | processing, sharing, or selling of consumer health data; |
9 | (iii) Collects consumer health data directly from consumers. "Regulated entity" does not |
10 | mean government agencies, tribal nations, or contracted service providers when processing |
11 | consumer health data on behalf of the government agency. |
12 | (24) "Reproductive or sexual health information" means personal information relating to |
13 | seeking or obtaining past, present, or future reproductive or sexual health services. "Reproductive |
14 | or sexual health information" includes, but is not limited to: |
15 | (i) Precise location information that could reasonably indicate a consumer's attempt to |
16 | acquire or receive reproductive or sexual health services; |
17 | (ii) Efforts to research or obtain reproductive or sexual health services; or |
18 | (iii) Any reproductive or sexual health information that is derived, extrapolated, or inferred, |
19 | including from nonhealth information (such as proxy, derivative, inferred, emergent, or algorithmic |
20 | data). |
21 | (25) "Reproductive or sexual health services" means health services or products that |
22 | support or relate to a consumer's reproductive system or sexual well-being including, but not limited |
23 | to: |
24 | (i) Individual health conditions, status, diseases, or diagnoses; |
25 | (ii) Psychological, behavioral, and medical interventions; |
26 | (iii) Health-related surgeries or procedures including, but not limited to, abortions; |
27 | (iv) Use or purchase of medication including, but not limited to, medications for the |
28 | purposes of abortion; |
29 | (v) Bodily functions, vital signs, symptoms, or measurements of the information described |
30 | in this subsection; |
31 | (vi) Diagnoses or diagnostic testing, treatment, or medication; and |
32 | (vii) Medical or nonmedical services related to and provided in conjunction with an |
33 | abortion including, but not limited to, associated diagnostics, counseling, supplies, and follow-up |
34 | services. |
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1 | (26)(i) "Sell" or "sale" means the exchange of consumer health data for monetary or other |
2 | valuable consideration. |
3 | (ii) "Sell" or "sale" does not include the exchange of consumer health data for monetary or |
4 | other valuable consideration: |
5 | (A) To a third party as an asset that is part of a merger, acquisition, bankruptcy, or other |
6 | transaction in which the third party assumes control of all or part of the regulated entity's or the |
7 | small business's assets that complies with the requirements and obligations in this chapter, but only |
8 | if the regulated entity, in a reasonable time before the exchange, provides the affected consumer |
9 | with both of the following: |
10 | (I) A notice describing the transfer, including the name of the entity receiving the |
11 | individual's consumer health data and the applicable privacy policies of the entity; and |
12 | (II) A reasonable opportunity to withdraw previously provided consent related to the |
13 | individual's consumer health data and request the deletion of the individual's consumer health data; |
14 | or |
15 | (B) By a regulated entity or a small business to a processor when such exchange is |
16 | consistent with the purpose for which the consumer health data was collected and disclosed to the |
17 | consumer. |
18 | (C) If the exchange is of publicly available information. |
19 | (27)(i) "Share" or "sharing" means to release, disclose, disseminate, divulge, make |
20 | available, provide access to, license, or otherwise communicate orally, in writing, or by electronic |
21 | or other means, consumer health data by a regulated entity or a small business to a third party or |
22 | affiliate. “Share” includes “sell.” |
23 | (ii) The term "share" or "sharing" does not include: |
24 | (A) The disclosure of consumer health data by a regulated entity or a small business to a |
25 | processor when such sharing is to provide goods or services in a manner consistent with the purpose |
26 | for which the consumer health data was collected and disclosed to the consumer; |
27 | (B) The disclosure of consumer health data to a third party with whom the consumer has a |
28 | direct relationship when: |
29 | (I) The disclosure is for purposes of providing a product or service requested by the |
30 | consumer; |
31 | (II) The regulated entity or the small business maintains control and ownership of the data; |
32 | and |
33 | (III) The third party uses the consumer health data only at direction from the regulated |
34 | entity or the small business and consistent with the purpose for which it was collected and consented |
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1 | to by the consumer; or |
2 | (C) The disclosure or transfer of personal data to a third party as an asset that is part of a |
3 | merger, acquisition, bankruptcy, or other transaction in which the third party assumes control of all |
4 | or part of the regulated entity's or the small business's assets and complies with the requirements |
5 | and obligations in this chapter. |
6 | (28) "Small business" means a regulated entity that satisfies one or both of the following |
7 | thresholds: |
8 | (i) Collects, processes, sells, or shares consumer health data of fewer than one hundred |
9 | thousand (100,000) consumers during a calendar year; or |
10 | (b) Derives less than fifty percent (50%) of gross revenue from the collection, processing, |
11 | selling, or sharing of consumer health data, and controls, processes, sells, or shares consumer health |
12 | data of fewer than twenty-five thousand (25,000) consumers. |
13 | (29) "Third party" means an entity other than a consumer, regulated entity, processor, small |
14 | business, or affiliate of the regulated entity or the small business. |
15 | 23-101.1-3. Consumer health data privacy policy. |
16 | (a)(1) A regulated entity, by January 1, 2026, and a small business, by April 1, 2026, shall |
17 | maintain a consumer health data privacy policy that clearly and conspicuously discloses: |
18 | (i) The categories of consumer health data collected and the purpose for which the data is |
19 | collected, including how the data will be used; |
20 | (ii) The categories of sources from which the consumer health data is collected; |
21 | (iii) The categories of consumer health data that is shared; |
22 | (iv) A list of the categories of third parties and specific affiliates with whom the regulated |
23 | entity or the small business shares the consumer health data; and |
24 | (v) How a consumer can exercise the rights provided in § 23-101.1-5. |
25 | (2) A regulated entity and a small business shall prominently publish a link to its consumer |
26 | health data privacy policy on its homepage. |
27 | (3) A regulated entity or a small business may not collect, use, or share additional |
28 | categories of consumer health data not disclosed in the consumer health data privacy policy without |
29 | first disclosing the additional categories and obtaining the consumer's affirmative consent prior to |
30 | the collection, use, or sharing of such consumer health data. |
31 | (4) A regulated entity or a small business may not collect, use, or share consumer health |
32 | data for additional purposes not disclosed in the consumer health data privacy policy without first |
33 | disclosing the additional purposes and obtaining the consumer's affirmative consent prior to the |
34 | collection, use, or sharing of such consumer health data. |
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1 | (5) It is a violation of this chapter for a regulated entity or a small business to contract with |
2 | a processor to process consumer health data in a manner that is inconsistent with the regulated |
3 | entity's or the small business's consumer health data privacy policy. |
4 | 23-101.1-4. Collection or sharing of consumer health data. |
5 | (a)(1) A regulated entity, by January 1, 2026, and a small business, by April 1, 2026, shall |
6 | not collect or share any consumer health data, including the sale of consumer health data, except: |
7 | (i) With consent from the consumer for such collection for a specified purpose; and |
8 | (ii) If the consumer health data is collected or shared only for one or more of the following |
9 | permissible purposes: |
10 | (A) As necessary to provide a product, service, or service feature to the individual to whom |
11 | the consumer health data pertains when requested by that individual. |
12 | (B) To initiate, manage, execute, or complete a financial or commercial transaction or to |
13 | fulfill an order for a specific product or service requested by an individual to whom the consumer |
14 | health data pertains including, but not limited to, associated routine administrative, operational, and |
15 | account servicing activity such as billing, shipping, storage, and accounting. |
16 | (C) To comply with an obligation under a law of this state or federal law. |
17 | (D) To protect public safety or public health. |
18 | (E) To prevent, detect, protect against, or respond to a security incident, identity theft, |
19 | fraud, harassment, malicious or deceptive activities, or activities that are illegal under the laws of |
20 | this state. |
21 | (F) To preserve the integrity or security of systems. |
22 | (G) To investigate, report, or prosecute persons responsible for activities that are illegal |
23 | under the laws of this state. |
24 | (2) Consent required under this section shall be obtained prior to the collection or sharing, |
25 | as applicable, of any consumer health data, and the request for consent shall clearly and |
26 | conspicuously disclose: |
27 | (i) The categories of consumer health data collected or shared; |
28 | (ii) The purpose of the collection or sharing of the consumer health data, including the |
29 | specific ways in which it will be used; |
30 | (iii) The categories of entities with whom the consumer health data is shared; and |
31 | (iv) How the consumer can withdraw consent from future collection or sharing of the |
32 | consumer's health data. |
33 | (3) A regulated entity or a small business shall not unlawfully discriminate against a |
34 | consumer for exercising any rights included in this chapter. |
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1 | 23-101.1-5. Consumer rights and requests -- Refusal -- Appeal. |
2 | (a)(1) A consumer has the right to confirm whether a regulated entity or a small business |
3 | is collecting, sharing, or selling consumer health data concerning the consumer and to access such |
4 | data, including a list of all third parties and affiliates with whom the regulated entity or the small |
5 | business has shared or sold the consumer health data and an active email address or other online |
6 | mechanism that the consumer may use to contact these third parties. |
7 | (2) A consumer has the right to withdraw consent from the regulated entity's or the small |
8 | business's collection and sharing of consumer health data concerning the consumer. |
9 | (3) A consumer has the right to have consumer health data concerning the consumer deleted |
10 | and may exercise that right by informing the regulated entity or the small business of the consumer's |
11 | request for deletion. |
12 | (i) A regulated entity or a small business that receives a consumer's request to delete any |
13 | consumer health data concerning the consumer shall: |
14 | (A) Delete the consumer health data from its records, including from all parts of the |
15 | regulated entity's or the small business's network, including archived or backup systems pursuant |
16 | subsection (a)(3)(B)(iii) of this section; and |
17 | (B) Notify all affiliates, processors, contractors, and other third parties with whom the |
18 | regulated entity or the small business has shared consumer health data of the deletion request. |
19 | (ii) All affiliates, processors, contractors, and other third parties that receive notice of a |
20 | consumer's deletion request shall honor the consumer's deletion request and delete the consumer |
21 | health data from its records, subject to the requirements of this chapter. |
22 | (iii) If consumer health data that a consumer requests to be deleted is stored on archived or |
23 | backup systems, then the request for deletion may be delayed to enable restoration of the archived |
24 | or backup systems; provided that, such delay may not exceed six (6) months from authenticating |
25 | the deletion request. |
26 | (4) A consumer may exercise the rights set forth in this chapter by submitting a request, at |
27 | any time, to a regulated entity or a small business. Such a request may be made by a secure and |
28 | reliable means established by the regulated entity or the small business and described in its |
29 | consumer health data privacy policy. The method shall take into account the ways in which |
30 | consumers normally interact with the regulated entity or the small business, the need for secure and |
31 | reliable communication of such requests, and the ability of the regulated entity or the small business |
32 | to authenticate the identity of the consumer making the request. A regulated entity or a small |
33 | business shall not require a consumer to create a new account in order to exercise consumer rights |
34 | pursuant to this chapter but may require a consumer to use an existing account. |
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1 | (5) If a regulated entity or a small business is unable to authenticate the request using |
2 | commercially reasonable efforts, the regulated entity or the small business shall not be required to |
3 | comply with a request to initiate an action under this section and may request that the consumer |
4 | provide additional information reasonably necessary to authenticate the consumer and the |
5 | consumer's request. |
6 | (6) Information provided in response to a consumer request shall be provided by a regulated |
7 | entity and a small business free of charge, up to twice annually per consumer. If requests from a |
8 | consumer are manifestly unfounded, excessive, or repetitive, the regulated entity or the small |
9 | business may charge the consumer a reasonable fee to cover the administrative costs of complying |
10 | with the request or decline to act on the request. The regulated entity and the small business bear |
11 | the burden of demonstrating the manifestly unfounded, excessive, or repetitive nature of the |
12 | request. |
13 | (7) A regulated entity and a small business shall comply with the consumer's requests under |
14 | subsection (a)(1) through (a)(3) of this section within forty-five (45) days of receipt of the request |
15 | submitted pursuant to the methods described in this section. A regulated entity and a small business |
16 | shall promptly take steps to authenticate a consumer request, but this does not extend the regulated |
17 | entity's and the small business's duty to comply with the consumer's request within forty-five (45) |
18 | days of receipt of the consumer's request. The response period may be extended once by forty-five |
19 | (45) additional days when reasonably necessary, taking into account the complexity and number of |
20 | the consumer's requests, so long as the regulated entity or the small business informs the consumer |
21 | of any such extension within the initial forty-five (45)-day response period, together with the reason |
22 | for the extension. |
23 | (b) A regulated entity shall comply with this section by January 1, 2026, and a small |
24 | business shall comply with this section beginning April 1, 2026. |
25 | 23-101.1-6. Data security practices. |
26 | A regulated entity, by January 1, 2026, and a small business, by April 1, 2026, shall: |
27 | (1) Restrict access to consumer health data by the employees, processors, and contractors |
28 | of such regulated entity or small business to only those employees, processors, and contractors for |
29 | which access is necessary to further the purposes for which the consumer provided consent or where |
30 | necessary to provide a product or service that the consumer to whom such consumer health data |
31 | relates has requested from such regulated entity or small business; and |
32 | (2) Establish, implement, and maintain administrative, technical, and physical data security |
33 | practices that, at a minimum, satisfy reasonable standard of care within the regulated entity's or the |
34 | small business's industry to protect the confidentiality, integrity, and accessibility of consumer |
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1 | health data appropriate to the volume and nature of the consumer health data at issue. |
2 | 23-101.1-7. Processors. |
3 | (a)(1) Effective January 1, 2026 for a regulated entity, and April 1, 2026 for a small |
4 | business, a processor may process consumer health data only pursuant to a binding contract |
5 | between the processor and the regulated entity or the small business that sets forth the processing |
6 | instructions and limit the actions the processor may take with respect to the consumer health data |
7 | it processes on behalf of the regulated entity or the small business. |
8 | (2) A processor may process consumer health data only in a manner that is consistent with |
9 | the binding instructions set forth in the contract with the regulated entity or the small business. |
10 | (b) A processor shall assist the regulated entity or the small business by appropriate |
11 | technical and organizational measures, insofar as this is possible, in fulfilling the regulated entity's |
12 | and the small business's obligations under this chapter. |
13 | (c) If a processor fails to adhere to the regulated entity's or the small business's instructions |
14 | or processes consumer health data in a manner that is outside the scope of the processor's contract |
15 | with the regulated entity or the small business, the processor is considered a regulated entity or a |
16 | small business with regard to such data and is subject to all the requirements of this chapter with |
17 | regard to such data. |
18 | 23-101.1-8. Valid authorization to sell -- Defects -- Provision to consumer. |
19 | (a) Subject to the requirements of § 23-101.1-4, by January 1, 2026 for a regulated entity |
20 | and April 1, 2026 for a small business, it is unlawful for any person to sell or offer to sell consumer |
21 | health data concerning a consumer without first obtaining valid authorization from the consumer. |
22 | The sale of consumer health data shall be consistent with the valid authorization signed by the |
23 | consumer. This authorization shall be separate and distinct from the consent obtained to collect or |
24 | share consumer health data, as required under § 23-101.1-4. |
25 | (b) A valid authorization to sell consumer health data is a document consistent with this |
26 | section and shall be written in plain language. The valid authorization to sell consumer health data |
27 | shall contain the following: |
28 | (1) The specific consumer health data concerning the consumer that the person intends to |
29 | sell; |
30 | (2) The name and contact information of the person collecting and selling the consumer |
31 | health data; |
32 | (3) The name and contact information of the person purchasing the consumer health data |
33 | from the seller identified in subsection (b)(2) of this section; |
34 | (4) A description of the purpose for the sale, including how the consumer health data shall |
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1 | be gathered and how it will be used by the purchaser identified in subsection (b)(3) of this section |
2 | when sold; |
3 | (5) A statement that the provision of goods or services may not be conditioned on the |
4 | consumer signing the valid authorization; |
5 | (6) A statement that the consumer has a right to revoke the valid authorization at any time |
6 | and a description on how to submit a revocation of the valid authorization; |
7 | (7) A statement that the consumer health data sold pursuant to the valid authorization may |
8 | be subject to redisclosure by the purchaser and may no longer be protected by this section; |
9 | (8) An expiration date for the valid authorization that expires one year from when the |
10 | consumer signs the valid authorization; and |
11 | (9) The signature of the consumer and date. |
12 | (c) An authorization is not valid if the document has any of the following defects: |
13 | (i) The expiration date has passed; |
14 | (ii) The authorization does not contain all the information required under this section; |
15 | (iii) The authorization has been revoked by the consumer; |
16 | (iv) The authorization has been combined with other documents to create a compound |
17 | authorization; or |
18 | (v) The provision of goods or services is conditioned on the consumer signing the |
19 | authorization. |
20 | (d) A copy of the signed valid authorization shall be provided to the consumer. |
21 | (e) The seller and purchaser of consumer health data shall retain a copy of all valid |
22 | authorizations for sale of consumer health data for six (6) years from the date of its signature or the |
23 | date when it was last in effect, whichever is later. |
24 | 23-101.1-10. Geofence restrictions. |
25 | It is unlawful for any person to implement a geofence around an entity that provides in- |
26 | person health care services where such geofence is used to: |
27 | (1) Identify or track consumers seeking health care services; or, |
28 | (2) Collect consumer health data from consumers. |
29 | 23-101.1-11. Application of consumer protection act. |
30 | The legislature finds that the practices covered by this chapter are matters vitally affecting |
31 | the public interest for the purpose of applying chapter 13.1 of title 6. A violation of this chapter is |
32 | not reasonable in relation to the development and preservation of business, and is an unfair or |
33 | deceptive act in trade or commerce and an unfair method of competition for the purpose of applying |
34 | chapter 13.1 of title 6. |
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1 | 23-101.1-12. Exemptions. |
2 | (a) This chapter does not apply to: |
3 | (1) Information that meets the definition of: |
4 | (i) Protected health information for purposes of the federal Health Insurance Portability |
5 | and Accountability Act of 1996, as amended, and related regulations; |
6 | (ii) Health care information collected, used, or disclosed in accordance with chapter 37.3 |
7 | of title 5; |
8 | (iii) Patient identifying information collected, used, or disclosed in accordance with 42 |
9 | C.F.R. Part 2, established pursuant to 42 U.S.C. Sec. 290dd-2; |
10 | (iv) Identifiable private information for purposes of the federal policy for the protection of |
11 | human subjects, 45 C.F.R. Part 46; identifiable private information that is otherwise information |
12 | collected as part of human subjects research pursuant to the good clinical practice guidelines issued |
13 | by the international council for harmonization; the protection of human subjects under 21 C.F.R. |
14 | Parts 50 and 56; or personal data used or shared in research conducted in accordance with one or |
15 | more of the requirements set forth in this subsection; |
16 | (v) Information and documents created specifically for, and collected and maintained by: |
17 | (A) A quality improvement program for purposes of chapter 17.17 of title 23; |
18 | (B) A peer review committee for purposes of § 23-17-25; |
19 | (C) A quality assurance committee for purposes of chapter 17.17 of title 23; or |
20 | (D) A hospital, for reporting of health care-associated adverse events for purposes of § 23- |
21 | 17-40. |
22 | (vi) Information and documents created for purposes of the federal Health Care Quality |
23 | Improvement Act of 1986, and related regulations; |
24 | (vii) Patient safety work product for purposes of 42 C.F.R. Part 3, established pursuant to |
25 | 42 U.S.C. Sec. 299b-21 through 299b-26; |
26 | (viii) Information that is: |
27 | (A) Deidentified in accordance with the requirements for deidentification set forth in 45 |
28 | C.F.R. Part 164; and |
29 | (B) Derived from any of the health care-related information listed in subsection (a)(1)(viii) |
30 | of this section; |
31 | (2) Information originating from, and intermingled to be indistinguishable with, |
32 | information under subsection (a)(1) of this section that is maintained by: |
33 | (i) A covered entity or business associate as defined by the federal Health Insurance |
34 | Portability and Accountability Act of 1996, as amended, and related regulations; |
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1 | (ii) A health care facility or health care provider; or |
2 | (iii) A program or a qualified service organization as defined by 42 C.F.R. Part 2, |
3 | established pursuant to 42 U.S.C. Sec. 290dd-2; |
4 | (3) Information used only for public health activities and purposes as described in 45 C.F.R. |
5 | Sec. 164.512 or that is part of a limited data set, as defined, and is used, disclosed, and maintained |
6 | in the manner required, by 45 C.F.R. Sec. 164.514 or corresponding state law. |
7 | (b) Personal information that is governed by and collected, used, or disclosed pursuant to |
8 | the following regulations, parts, titles, or acts, is exempt from this chapter: |
9 | (i) The Gramm-Leach-Bliley act (15 U.S.C. 6801 et seq.) and implementing regulations; |
10 | (ii) Part C of Title XI of the Social Security Act (42 U.S.C. 1320d et seq.); |
11 | (iii) The Fair Credit Reporting Act (15 U.S.C. 1681 et seq.); |
12 | (iv) The Family Educational Rights and Privacy Act (20 U.S.C. 1232g; Part 99 of Title 34, |
13 | C.F.R.); |
14 | (v) The Rhode Island health benefit exchange and applicable statutes and regulations, |
15 | including 45 C.F.R. Sec. 155.260 and §§ 42-157-1 et seq.; or |
16 | (vi) Privacy rules adopted by the office of the insurance commissioner. |
17 | (c) The obligations imposed on regulated entities, small businesses, and processors under |
18 | this chapter does not restrict a regulated entity's, small businesses, or processor's ability for |
19 | collection, use, or disclosure of consumer health data to prevent, detect, protect against, or respond |
20 | to security incidents, identity theft, fraud, harassment, malicious or deceptive activities, or any |
21 | activity that is illegal under Rhode Island law or federal law; preserve the integrity or security of |
22 | systems; or investigate, report, or prosecute those responsible for any such action that is illegal |
23 | under Rhode Island law or federal law. |
24 | (4) If a regulated entity, small business, or processor processes consumer health data |
25 | pursuant to subsection (a)(3) of this section, such entity bears the burden of demonstrating that such |
26 | processing qualifies for the exemption and complies with the requirements of this section. |
27 | 23-101.1-13. Penalties and remedies. |
28 | (a) A person who alleges a violation of this chapter may bring a civil action for appropriate |
29 | injunctive relief and compensatory and punitive damages in the superior court for the county where |
30 | the alleged violation occurred, the county where the complainant resides, or the county where the |
31 | person against whom the civil complaint is filed resides or has their principal place of business. A |
32 | prevailing plaintiff shall be entitled to an award of reasonable attorneys’ fees and costs. |
33 | (b) A violation of this chapter shall also constitute a deceptive trade practice in violation |
34 | of chapter 13.1 of title 6, and the attorney general may bring an enforcement action over violations |
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1 | of this chapter. |
2 | SECTION 2. This act shall take effect upon passage. |
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EXPLANATION | |
BY THE LEGISLATIVE COUNCIL | |
OF | |
A N A C T | |
RELATING TO HEALTH AND SAFETY -- REPRODUCTIVE FREEDOM AND GENDER | |
AFFIRMING CARE HEALTH DATA PRIVACY ACT | |
*** | |
1 | This act would create the reproductive freedom and gender affirming care health data |
2 | privacy act. |
3 | This act would take effect upon passage. |
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