Plain English Breakdown
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S2129 • 2026
AN ACT RELATING TO HEALTH AND SAFETY -- REPRODUCTIVE FREEDOM AND GENDER AFFIRMING CARE HEALTH DATA PRIVACY ACT (Classifies, research, intent and interest in healthcare services as protected healthcare data. Adds responsibilities for regulated entities that seek to collect and share consumer data including a requirement for specific and conspicuous consumer consent.)
This bill passed both chambers and reached final enrollment, even if later executive action is not shown here.
The plain English breakdown is still being put together. The official documents below are already here.
Introduced, referred to Senate Judiciary
AN ACT RELATING TO HEALTH AND SAFETY -- REPRODUCTIVE FREEDOM AND GENDER AFFIRMING CARE HEALTH DATA PRIVACY ACT (Classifies, research, intent and interest in healthcare services as protected healthcare data. Adds responsibilities for regulated entities that seek to collect and share consumer data including a requirement for specific and conspicuous consumer consent.)
S2129 2026 -- S 2129 ======== LC004011 ======== STATE OF RHODE ISLAND IN GENERAL ASSEMBLY JANUARY SESSION, A.D. 2026 ____________ A N A C T RELATING TO HEALTH AND SAFETY -- REPRODUCTIVE FREEDOM AND GENDER AFFIRMING CARE HEALTH DATA PRIVACY ACT Introduced By: Senators LaMountain, Murray, Gu, Burke, McKenney, Britto, Urso, Acosta, Bissaillon, and Vargas Date Introduced: January 16, 2026 Referred To: Senate Judiciary 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 LC004011 - Page 2 of 17 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 LC004011 - Page 3 of 17 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) "Healthcare 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; LC004011 - Page 4 of 17 1 (vi) Diagnoses or diagnostic testing, treatment, or medication; 2 (vii) Reproductive healthcare 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. LC004011 - Page 5 of 17 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 healthcare services in Rhode Island, or produces or provides healthcare 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. LC004011 - Page 6 of 17 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 LC004011 - Page 7 of 17 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, 2027, and a small business, by April 1, 2027, 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. LC004011 - Page 8 of 17 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, 2027, and a small business, by April 1, 2027, 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. LC004011 - Page 9 of 17 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. LC004011 - Page 10 of 17 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, 2027, and a small 24 business shall comply with this section beginning April 1, 2027. 25 23-101.1-6. Data security practices. 26 A regulated entity, by January 1, 2027, and a small business, by April 1, 2027, 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 LC004011 - Page 11 of 17 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, 2027, for a regulated entity, and April 1, 2027, 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, 2027, for a regulated entity 20 and April 1, 2027, 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 LC004011 - Page 12 of 17 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 healthcare services where such geofence is used to: 27 (1) Identify or track consumers seeking healthcare 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. LC004011 - Page 13 of 17 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) Healthcare information collected, used, or disclosed in accordance with chapter 37.3 of 7 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 healthcare-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 healthcare-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; LC004011 - Page 14 of 17 1 (ii) A healthcare facility or healthcare 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 LC004011 - Page 15 of 17 1 of this chapter. 2 SECTION 2. This act shall take effect upon passage. ======== LC004011 ======== LC004011 - Page 16 of 17 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 classify research, intent and interest in healthcare services as protected 2 healthcare data. The act sets forth additional responsibilities for regulated entities that seek to 3 collect and share consumer data including a requirement for specific and conspicuous consumer 4 consent. It requires separate conspicuous consent from the consumer to sell this data. The act further 5 stipulates acceptable uses for the data and what rights the consumer has regarding their data. 6 This act would take effect upon passage. ======== LC004011 ======== LC004011 - Page 17 of 17