2026 -- H 7357 | |
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LC004350 | |
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STATE OF RHODE ISLAND | |
IN GENERAL ASSEMBLY | |
JANUARY SESSION, A.D. 2026 | |
____________ | |
A N A C T | |
RELATING TO HEALTH AND SAFETY -- REPRODUCTIVE HEALTH AND GENDER- | |
AFFIRMING HEALTHCARE DATA PRIVACY ACT | |
| |
Introduced By: Representatives Knight, Boylan, McEntee, Speakman, Donovan, Carson, | |
Date Introduced: January 28, 2026 | |
Referred To: House 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 HEALTH AND GENDER-AFFIRMING HEALTHCARE DATA PRIVACY |
5 | ACT |
6 | 23-101.1-1. Title. |
7 | This chapter may be cited as the "Reproductive Health and Gender-Affirming Healthcare |
8 | Data Privacy Act." |
9 | 23-101.1-2. Definitions. |
10 | As used in this chapter: |
11 | (1) "Affiliate" means a legal entity that shares common branding with another legal entity |
12 | and controls, is controlled by, or is under common control with another legal entity. For the |
13 | purposes of this definition, "control" or "controlled" means: |
14 | (i) Ownership of, or the power to vote, more than fifty percent (50%) of the outstanding |
15 | shares of any class of voting security of a company; |
16 | (ii) Control in any manner over the election of a majority of the directors or of individuals |
17 | exercising similar functions; or |
18 | (iii) The power to exercise controlling influence over the management of a company. |
| |
1 | (2) "Authenticate" means to use reasonable means to determine that a request to exercise |
2 | any of the rights afforded in this chapter is being made by, or on behalf of, the consumer who is |
3 | entitled to exercise such consumer rights with respect to the consumer health data at issue. |
4 | (3) "Biometric data" means data that is generated from the measurement or technological |
5 | processing of an individual's physiological, biological, or behavioral characteristics and that |
6 | identifies a consumer, whether individually or in combination with other data. Biometric data |
7 | includes, but is not limited to: |
8 | (i) Imagery of the iris, retina, fingerprint, face, hand, palm, vein patterns, and voice |
9 | recordings, from which an identifier template can be extracted; or |
10 | (ii) Keystroke patterns or rhythms and gait patterns or rhythms that contain identifying |
11 | information. |
12 | (4) "Collect" means to buy, rent, access, retain, receive, acquire, infer, derive, or otherwise |
13 | process consumer health data in any manner, including receiving the data from the individual, either |
14 | actively or passively, or by observing or tracking the individual’s online activity or precise location. |
15 | (5)(i) "Consent" means an affirmative act that signifies a consumer's freely given, specific, |
16 | informed, opt-in, voluntary, and unambiguous agreement, which may include written consent |
17 | provided by electronic means; provided: |
18 | (A) The request is provided to the consumer in a clear and conspicuous stand-alone |
19 | disclosure; |
20 | (B) The request includes a description of the processing purpose for which the consumer’s |
21 | consent is sought and clearly states the specific categories of personal data that the regulated entity |
22 | intends to collect, process, or transfer; and |
23 | (C) The request is made available to the consumer in each language in which the regulated |
24 | entity provides a product or service for which authorization is sought and in a manner reasonably |
25 | accessible to consumers with disabilities. |
26 | (ii) "Consent" may not be obtained by: |
27 | (A) A consumer's acceptance of a general or broad terms of use agreement or a similar |
28 | document that contains descriptions of personal data processing along with other unrelated |
29 | information; |
30 | (B) A consumer hovering over, muting, pausing, or closing a given piece of content; |
31 | (C) A consumer's agreement obtained through the use of deceptive designs; or |
32 | (D) Inference from the inaction of a consumer or the consumer’s continued use of a service |
33 | or product provided by the regulated entity. |
34 | (6) "Consumer" means a natural person who is |
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1 | (i) A Rhode Island resident, or a natural person whose consumer health data is collected |
2 | while present in Rhode Island; and |
3 | (ii) Who is acting only in an individual or household context, however identified, including |
4 | by any unique identifier. |
5 | (iii) "Consumer" does not include an individual acting in an employment context. |
6 | (7) "Consumer health data" means: |
7 | (i)(A) A consumer’s gender-affirming care information; |
8 | (B) A consumer’s reproductive or sexual health information; or |
9 | (ii) Any information that a regulated entity or a small business, or their respective |
10 | processor, processes to associate or identify a consumer with the data described in subsection (7)(i) |
11 | of this section that is derived or extrapolated from information that is not consumer health data |
12 | (such as proxy, derivative, inferred, or emergent data by any means, including algorithms or |
13 | machine learning). |
14 | (iii) "Consumer health data" does not include publicly available information, deidentified |
15 | data, or personal information that is used to engage in public or peer-reviewed scientific, historical, |
16 | or statistical research in the public interest that adheres to all other applicable ethics and privacy |
17 | laws and is approved, monitored, and governed by an institutional review board, human subjects |
18 | research ethics review board, or a similar independent oversight entity that determines that the |
19 | regulated entity or the small business has implemented reasonable safeguards to mitigate privacy |
20 | risks associated with research, including any risks associated with reidentification. |
21 | (8) "Deceptive design" means a user interface designed or manipulated with the effect of |
22 | subverting or impairing user autonomy, decision making, or choice. |
23 | (9) "Deidentified data" means data that cannot reasonably be used to infer information |
24 | about, or otherwise be linked to, an identified or identifiable consumer, or a device linked to such |
25 | consumer, if the regulated entity or the small business that possesses such data: |
26 | (i) Takes reasonable measures to ensure that such data cannot be associated with a |
27 | consumer; |
28 | (ii) Publicly commits to process such data only in a deidentified fashion and not attempt to |
29 | reidentify such data; and |
30 | (iii) Contractually obligates any recipients of such data to satisfy the criteria set forth in |
31 | this subsection. |
32 | (10) "Gender-affirming care information" means personal information relating to seeking |
33 | or obtaining past, present, or future gender-affirming care-related services. "Gender-affirming care |
34 | information" includes, but is not limited to: |
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1 | (i) Precise location information that could reasonably indicate a consumer's attempt to |
2 | acquire or receive gender-affirming care-related services; |
3 | (ii) Efforts to research or obtain gender-affirming care-related services; or |
4 | (iii) Any gender-affirming care information that is derived, extrapolated, or inferred, |
5 | including from information that is not consumer health data, such as proxy, derivative, inferred, |
6 | emergent, or algorithmic data. |
7 | (11) "Gender-affirming care-related services" means health services or products relating to |
8 | the treatment of gender dysphoria and gender incongruence that support and affirm an individual's |
9 | gender identity including, but not limited to: |
10 | (i) Gender-affirming healthcare services as defined in § 23-101-2; |
11 | (ii) Individual health conditions, status, or diagnoses; |
12 | (iii) Psychological, behavioral, and medical interventions; |
13 | (iv) Surgeries or procedures; |
14 | (v) Use or purchase of medication including, but not limited to, medications for the |
15 | purposes of gender-affirming hormone therapy; |
16 | (vi) Bodily functions, vital signs, symptoms, or measurements of the information described |
17 | in this subsection; |
18 | (vii) Diagnoses or diagnostic testing, treatment, or medication; and |
19 | (viii) Medical or nonmedical services related to and/or provided in conjunction with the |
20 | treatment of gender dysphoria and gender incongruence including, but not limited to, associated |
21 | diagnostics, counseling, supplies, and follow-up services. |
22 | (12) "Geofence" means technology that uses global positioning coordinates, cell tower |
23 | connectivity, cellular data, radio frequency identification, Wifi data, and/or any other form of |
24 | spatial or location detection to establish a virtual boundary around a specific physical location, or |
25 | to locate a consumer within a virtual boundary. For purposes of this definition, "geofence" means |
26 | a virtual boundary that is two thousand feet (2,000') or less from the perimeter of the physical |
27 | location. |
28 | (13) "Homepage" means the introductory page of an internet website and any internet |
29 | webpage where personal information is collected. In the case of an online service, such as a mobile |
30 | application, homepage means the application's platform page or download page, and a link within |
31 | the application, such as from the application configuration, "about," "information," or settings page. |
32 | (14) "Person" means, where applicable, natural persons, corporations, trusts, |
33 | unincorporated associations, and partnerships. "Person" does not include government agencies, |
34 | tribal nations, or contracted service providers when processing consumer health data on behalf of |
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1 | a government agency. |
2 | (15) "Personal information" means information that identifies or is reasonably capable of |
3 | being associated or linked, directly or indirectly, with a particular consumer. "Personal |
4 | information" includes, but is not limited to, data associated with a persistent unique identifier, such |
5 | as a cookie ID, an IP address, a device identifier, or any other form of persistent unique identifier. |
6 | "Personal information" does not include publicly available information or deidentified data. |
7 | (16) "Precise location information" means information derived from technology including, |
8 | but not limited to, global positioning system level latitude and longitude coordinates or other |
9 | mechanisms, that directly identifies the specific location of an individual with precision and |
10 | accuracy within a radius of one thousand seven hundred fifty feet (1,750'). "Precise location |
11 | information" does not include the content of communications, or any data generated by or |
12 | connected to advanced utility metering infrastructure systems or equipment for use by a utility. |
13 | (17) "Process" or "processing" means any operation or set of operations performed on |
14 | consumer health data. |
15 | (18) "Processor" means a person that processes consumer health data on behalf of a |
16 | regulated entity or a small business. |
17 | (19) "Publicly available information" means information that: |
18 | (i) Is made available through federal, state, or municipal government records or widely |
19 | distributed media; |
20 | (ii) Is released in a disclosure to the general public as required by federal, state, or local |
21 | law; or |
22 | (iii) A regulated entity or a small business has a reasonable basis to believe a consumer has |
23 | made available in such a way that the consumer no longer maintains a reasonable expectation of |
24 | privacy in the information. Provided, "publicly available information" does not include any |
25 | biometric data collected about a consumer by a business without the consumer's consent or publicly |
26 | available information combined or intermixed with personal information. |
27 | (20) "Regulated entity" means any legal entity that: |
28 | (i) Provides gender-affirming care-related services or reproductive or sexual health-related |
29 | services in Rhode Island, or produces or provides gender-affirming care-related services or |
30 | reproductive or sexual health-related services that are targeted to consumers in Rhode Island; |
31 | (ii) Alone or jointly with others, determines the purpose and means of collecting, |
32 | processing, sharing, or selling of consumer health data; and |
33 | (iii) Collects consumer health data directly from consumers. "Regulated entity" does not |
34 | mean government agencies, tribal nations, or contracted service providers when processing |
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1 | consumer health data on behalf of the government agency. |
2 | (21) "Reproductive or sexual health information" means personal information relating to |
3 | seeking or obtaining past, present, or future reproductive or sexual health-related services. |
4 | "Reproductive or sexual health information" includes, but is not limited to: |
5 | (i) Precise location information that could reasonably indicate a consumer's attempt to |
6 | acquire or receive reproductive or sexual health-related services; |
7 | (ii) Efforts to research or obtain reproductive or sexual health-related services; or |
8 | (iii) Any reproductive or sexual health information that is derived, extrapolated, or inferred, |
9 | including from nonhealth information (such as proxy, derivative, inferred, emergent, or algorithmic |
10 | data). |
11 | (22) "Reproductive or sexual health-related services" means health services or products |
12 | that support or relate to a consumer's reproductive system or sexual well-being including, but not |
13 | limited to, services or products relating to: |
14 | (i) Reproductive healthcare services as defined in § 23-101-2; |
15 | (ii) Individual health conditions, status, or diagnoses; |
16 | (iii) Psychological, behavioral, and medical interventions; |
17 | (iv) Surgeries or procedures including, but not limited to, abortions; |
18 | (iv) Use or purchase of medication including, but not limited to, medications for the |
19 | purposes of abortion; |
20 | (v) Bodily functions, vital signs, symptoms, or measurements of the information described |
21 | in this subsection; |
22 | (vi) Diagnoses or diagnostic testing, treatment, or medication; and |
23 | (vii) Medical or nonmedical services related to or provided in conjunction with pregnancy, |
24 | contraception, assisted reproduction, pregnancy loss management, or the termination of a |
25 | pregnancy including, but not limited to, associated diagnostics, counseling, supplies, and follow- |
26 | up services. |
27 | (23) "Sell" or "sale" means the sharing of consumer health data in exchange for monetary |
28 | or other valuable consideration. |
29 | (24)(i) "Share" or "sharing" means to release, disclose, disseminate, divulge, make |
30 | available, provide access to, license, or otherwise communicate orally, in writing, or by electronic |
31 | or other means, consumer health data by a regulated entity or a small business to a third party or |
32 | affiliate. "Share" includes "sell." |
33 | (ii) The term "share" or "sharing" does not include: |
34 | (A) The disclosure of consumer health data by a regulated entity or a small business to a |
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1 | processor when such sharing is to provide goods or services in a manner consistent with the purpose |
2 | for which the consumer health data was collected and disclosed to the consumer; |
3 | (B) The disclosure of consumer health data to a third party with whom the consumer has a |
4 | direct relationship when: |
5 | (I) The disclosure is for purposes of providing a product or service requested by the |
6 | consumer; |
7 | (II) The regulated entity or the small business maintains control and ownership of the data; |
8 | and |
9 | (III) The third party uses the consumer health data only at direction from the regulated |
10 | entity or the small business and consistent with the purpose for which it was collected and consented |
11 | to by the consumer; or |
12 | (C) The disclosure or transfer of consumer health data to a third party as an asset that is |
13 | part of a merger, acquisition, bankruptcy, or other transaction in which the third party assumes |
14 | control of all or part of the regulated entity's or the small business's assets and complies with the |
15 | requirements and obligations in this chapter, but only if the regulated entity or small business, in a |
16 | reasonable time before the disclosure, provides the affected consumer with both of the following: |
17 | (I) A notice describing the transfer, including the name of the entity receiving the |
18 | individual's consumer health data and the applicable privacy policies of the entity; and |
19 | (II) A reasonable opportunity to withdraw previously provided consent related to the |
20 | individual's consumer health data and request the deletion of the individual's consumer health data; |
21 | (D) The disclosure is of publicly available information. |
22 | (25) "Small business" means a regulated entity that satisfies one or both of the following |
23 | thresholds: |
24 | (i) Collects, processes, sells, or shares consumer health data of fewer than one hundred |
25 | thousand (100,000) consumers during a calendar year; or |
26 | (ii) Derives less than fifty percent (50%) of gross revenue from the collection, processing, |
27 | selling, or sharing of consumer health data, and controls, processes, sells, or shares consumer health |
28 | data of fewer than twenty-five thousand (25,000) consumers. |
29 | (26) "Third party" means an entity other than a consumer, regulated entity, processor, small |
30 | business, or affiliate of the regulated entity or the small business. |
31 | 23-101.1-3. Consumer health data privacy policy. |
32 | (a)(1) A regulated entity, by January 1, 2027, and a small business, by April 1, 2027, shall |
33 | maintain a consumer health data privacy policy that clearly and conspicuously discloses: |
34 | (i) The categories of consumer health data collected and the purpose for which the data is |
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1 | collected, including how the data will be used; |
2 | (ii) The categories of sources from which the consumer health data is collected; |
3 | (iii) The categories of consumer health data that is shared; |
4 | (iv) A list of the categories of third parties and specific affiliates with whom the regulated |
5 | entity or the small business shares the consumer health data; and |
6 | (v) How a consumer can exercise the rights provided in §23-101.1- 5. |
7 | (b) A regulated entity and a small business shall prominently publish a link to its consumer |
8 | health data privacy policy on its homepage. |
9 | (c) A regulated entity or a small business may not collect, use, or share additional categories |
10 | of consumer health data not disclosed in the consumer health data privacy policy without first |
11 | disclosing the additional categories and obtaining the consumer's affirmative consent prior to the |
12 | collection, use, or sharing of such consumer health data. |
13 | (d) A regulated entity or a small business may not collect, use, or share consumer health |
14 | data for additional purposes not disclosed in the consumer health data privacy policy without first |
15 | disclosing the additional purposes and obtaining the consumer's affirmative consent prior to the |
16 | collection, use, or sharing of such consumer health data. |
17 | (e) It is a violation of this chapter for a regulated entity or a small business to contract with |
18 | a processor to process consumer health data in a manner that is inconsistent with the regulated |
19 | entity's or the small business's consumer health data privacy policy. |
20 | 23-101.1-4. Collection or sharing of consumer health data. |
21 | (a)(1) A regulated entity, by January 1, 2027, and a small business, by April 1, 2027, may |
22 | not collect or share any consumer health data, including the sale of consumer health data, except: |
23 | (i) With consent from the consumer for such collection for a specified purpose; and |
24 | (ii) If the consumer health data is collected or shared only for one or more of the following |
25 | permissible purposes: |
26 | (A) As necessary to provide a product, service, or service feature to the individual to whom |
27 | the consumer health data pertains when requested by that individual; |
28 | (B) To initiate, manage, execute, or complete a financial or commercial transaction or to |
29 | fulfill an order for a specific product or service requested by an individual to whom the consumer |
30 | health data pertains, including, but not limited to, associated routine administrative, operational, |
31 | and account servicing activity such as billing, shipping, storage, and accounting; |
32 | (C) To comply with an obligation under a law of this state or federal law; |
33 | (D) To protect public safety or public health; |
34 | (E) To prevent, detect, protect against, or respond to a security incident, identity theft, |
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1 | fraud, harassment, malicious or deceptive activities, or activities that are illegal under the laws of |
2 | this state; |
3 | (F) To preserve the integrity or security of systems; and |
4 | (G) To investigate, report, or prosecute persons responsible for activities that are illegal |
5 | under the laws of this state. |
6 | (b) Consent required under this section shall be obtained prior to the collection or sharing, |
7 | as applicable, of any consumer health data, and the request for consent shall clearly and |
8 | conspicuously disclose: |
9 | (1) The categories of consumer health data collected or shared; |
10 | (2) The purpose of the collection or sharing of the consumer health data, including the |
11 | specific ways in which it will be used; |
12 | (3) The categories of entities with whom the consumer health data is shared; and |
13 | (4) How the consumer can withdraw consent from future collection or sharing of the |
14 | consumer's health data. |
15 | (c) A regulated entity or a small business shall not unlawfully discriminate against a |
16 | consumer for exercising any rights included in this chapter. |
17 | 23-101.1-5. Consumer rights and requests -- Refusal -- Appeal. |
18 | (a) A consumer has the right to confirm whether a regulated entity or a small business is |
19 | collecting, sharing, or selling consumer health data concerning the consumer and to access such |
20 | data, including a list of all third parties and affiliates with whom the regulated entity or the small |
21 | business has shared or sold the consumer health data and an active email address or other online |
22 | mechanism that the consumer may use to contact these third parties. |
23 | (b) A consumer has the right to withdraw consent from the regulated entity's or the small |
24 | business's collection and sharing of consumer health data concerning the consumer. |
25 | (c) A consumer has the right to have consumer health data concerning the consumer deleted |
26 | and may exercise that right by informing the regulated entity or the small business of the consumer's |
27 | request for deletion. |
28 | (1) A regulated entity or a small business that receives a consumer's request to delete any |
29 | consumer health data concerning the consumer shall: |
30 | (i) Delete the consumer health data from its records, including from all parts of the |
31 | regulated entity's or the small business's network, including archived or backup systems pursuant |
32 | to subsection (c)(3) of this section; and |
33 | (ii) Notify all affiliates, processors, contractors, and other third parties with whom the |
34 | regulated entity or the small business has shared consumer health data of the deletion request. |
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1 | (2) All affiliates, processors, contractors, and other third parties that receive notice of a |
2 | consumer's deletion request shall honor the consumer's deletion request and delete the consumer |
3 | health data from its records, subject to the requirements of this chapter. |
4 | (3) If consumer health data that a consumer requests to be deleted is stored on archived or |
5 | backup systems, then the request for deletion may be delayed to enable restoration of the archived |
6 | or backup systems; provided that, such delay may not exceed six (6) months from authenticating |
7 | the deletion request. |
8 | (d) A consumer may exercise the rights set forth in this chapter by submitting a request, at |
9 | any time, to a regulated entity or a small business. Such a request may be made by a secure and |
10 | reliable means established by the regulated entity or the small business and described in its |
11 | consumer health data privacy policy. The method shall take into account the ways in which |
12 | consumers normally interact with the regulated entity or the small business, the need for secure and |
13 | reliable communication of such requests, and the ability of the regulated entity or the small business |
14 | to authenticate the identity of the consumer making the request. A regulated entity or a small |
15 | business may not require a consumer to create a new account in order to exercise consumer rights |
16 | pursuant to this chapter but may require a consumer to use an existing account. |
17 | (e) If a regulated entity or a small business is unable to authenticate the request using |
18 | commercially reasonable efforts, the regulated entity or the small business is not required to comply |
19 | with a request to initiate an action under this section and may request that the consumer provide |
20 | additional information reasonably necessary to authenticate the consumer and the consumer's |
21 | request. |
22 | (f) Information provided in response to a consumer request shall be provided by a regulated |
23 | entity and a small business free of charge, up to twice annually per consumer. If requests from a |
24 | consumer are manifestly unfounded, excessive, or repetitive, the regulated entity or the small |
25 | business may charge the consumer a reasonable fee to cover the administrative costs of complying |
26 | with the request or decline to act on the request. The regulated entity and the small business bear |
27 | the burden of demonstrating the manifestly unfounded, excessive, or repetitive nature of the |
28 | request. |
29 | (g) A regulated entity and a small business shall comply with the consumer's requests under |
30 | subsections (a) through (d) of this section within forty-five (45) days of receipt of the request |
31 | submitted pursuant to the methods described in this section. A regulated entity and a small business |
32 | shall promptly take steps to authenticate a consumer request, but this shall not extend the regulated |
33 | entity's and the small business's duty to comply with the consumer's request within forty-five (45) |
34 | days of receipt of the consumer's request. The response period may be extended once by forty-five |
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1 | (45) additional days when reasonably necessary, taking into account the complexity and number |
2 | of the consumer's requests, so long as the regulated entity or the small business informs the |
3 | consumer of any such extension within the initial forty-five (45) day response period, together with |
4 | the reason for the extension. |
5 | (h) A regulated entity shall comply with this section by January 1, 2027, and a small |
6 | business shall comply with this section beginning April 1, 2027. |
7 | 23-101.1-6. Data security practices. |
8 | A regulated entity, by January 1, 2027, and a small business, by April 1, 2027, shall: |
9 | (1) Restrict access to consumer health data by the employees, processors, and contractors |
10 | of such regulated entity or small business to only those employees, processors, and contractors for |
11 | which access is necessary to further the purposes for which the consumer provided consent or where |
12 | necessary to provide a product or service that the consumer to whom such consumer health data |
13 | relates has requested from such regulated entity or small business; and |
14 | (2) Establish, implement, and maintain administrative, technical, and physical data security |
15 | practices that, at a minimum, satisfy reasonable standard of care within the regulated entity's or the |
16 | small business's industry to protect the confidentiality, integrity, and accessibility of consumer |
17 | health data appropriate to the volume and nature of the consumer health data at issue. |
18 | 23-101.1-7. Processors. |
19 | (a)(1) By January 1, 2027, for a regulated entity and April 1, 2027, for a small business, a |
20 | processor may process consumer health data only pursuant to a binding contract between the |
21 | processor and the regulated entity or the small business that sets forth the processing instructions |
22 | and limit the actions the processor may take with respect to the consumer health data it processes |
23 | on behalf of the regulated entity or the small business. |
24 | (2) A processor may process consumer health data only in a manner that is consistent with |
25 | the binding instructions set forth in the contract with the regulated entity or the small business. |
26 | (b) A processor shall assist the regulated entity or the small business by appropriate |
27 | technical and organizational measures, insofar as this is possible, in fulfilling the regulated entity's |
28 | and the small business's obligations under this chapter. |
29 | (c) If a processor fails to adhere to the regulated entity's or the small business's instructions |
30 | or processes consumer health data in a manner that is outside the scope of the processor's contract |
31 | with the regulated entity or the small business, the processor is considered a regulated entity or a |
32 | small business with regard to such data and is subject to all the requirements of this chapter with |
33 | regard to such data. |
34 | 23-101.1-8. Valid authorization to sell -- Defects -- Provision to consumer. |
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1 | (a) Subject to the requirements of § 23-101.1-4, by January 1, 2027, for a regulated entity |
2 | and April 1, 2027, for a small business, it is unlawful for any person to sell or offer to sell consumer |
3 | health data concerning a consumer without first obtaining valid authorization from the consumer. |
4 | The sale of consumer health data shall be consistent with the valid authorization signed by the |
5 | consumer. This authorization shall be separate and distinct from the consent obtained to collect or |
6 | share consumer health data, as required under the provisions of § 23-101.1-4. |
7 | (b) A valid authorization to sell consumer health data is a document consistent with this |
8 | section and shall be written in plain language. The valid authorization to sell consumer health data |
9 | shall contain the following: |
10 | (1) The specific consumer health data concerning the consumer that the person intends to |
11 | sell; |
12 | (2) The name and contact information of the person collecting and selling the consumer |
13 | health data; |
14 | (3) The name and contact information of the person purchasing the consumer health data |
15 | from the seller identified in subsection (b) of this section; |
16 | (4) A description of the purpose for the sale, including how the consumer health data will |
17 | be gathered and how it will be used by the purchaser identified in subsection (b)(3) of this section |
18 | when sold; |
19 | (5) A statement that the provision of goods or services may not be conditioned on the |
20 | consumer signing the valid authorization; |
21 | (6) A statement that the consumer has a right to revoke the valid authorization at any time |
22 | and a description on how to submit a revocation of the valid authorization; |
23 | (7) A statement that the consumer health data sold pursuant to the valid authorization may |
24 | be subject to redisclosure by the purchaser and may no longer be protected by this section; |
25 | (8) An expiration date for the valid authorization that expires one year from when the |
26 | consumer signs the valid authorization; and |
27 | (9) The signature of the consumer and date. |
28 | (c) An authorization is not valid if the document has any of the following defects: |
29 | (1) The expiration date has passed; |
30 | (2) The authorization does not contain all the information required under this section; |
31 | (3) The authorization has been revoked by the consumer; |
32 | (4) The authorization has been combined with other documents to create a compound |
33 | authorization; or |
34 | (5) The provision of goods or services is conditioned on the consumer signing the |
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1 | authorization. |
2 | (d) A copy of the signed valid authorization shall be provided to the consumer. |
3 | (e) The seller and purchaser of consumer health data shall retain a copy of all valid |
4 | authorizations for sale of consumer health data for six (6) years from the date of its signature or the |
5 | date when it was last in effect, whichever is later. |
6 | 23-101.1-9. Geofence restrictions. |
7 | It is unlawful for any person to implement a geofence around an entity that provides in- |
8 | person reproductive healthcare services, as defined in § 23-101-2, or gender-affirming healthcare |
9 | services, as defined in § 23-101-2, where such geofence is used to: |
10 | (1) Identify or track consumers seeking reproductive healthcare services or gender- |
11 | affirming healthcare services; or, |
12 | (2) Collect consumer health data from consumers. |
13 | 23-101.1-10. Exemptions. |
14 | This chapter does not apply to: |
15 | (1) Information that meets the definition of: |
16 | (i) Protected health information for purposes of the federal health insurance portability and |
17 | accountability act of 1996, Pub. L. No. 104-191 (1996), and related regulations; |
18 | (ii) Health care information collected, used, or disclosed in accordance with chapter 37.3 |
19 | of title 5; |
20 | (iii) Patient identifying information collected, used, or disclosed in accordance with 42 |
21 | C.F.R. Part 2, established pursuant to 42 U.S.C. § 290dd-2; |
22 | (iv) Identifiable private information for purposes of the federal policy for the protection of |
23 | human subjects, 45 C.F.R. Part 46; identifiable private information that is otherwise information |
24 | collected as part of human subjects research pursuant to the good clinical practice guidelines issued |
25 | by the international council for harmonization; the protection of human subjects under 21 C.F.R. |
26 | Parts 50 and 56; or personal data used or shared in research conducted in accordance with one or |
27 | more of the requirements set forth in this subsection; |
28 | (v) Information and documents created specifically for, and collected and maintained by: |
29 | (A) A quality improvement program for purposes of chapter 17.17 of title 23; |
30 | (B) A peer review committee for purposes of § 23-17-25; |
31 | (C) A quality assurance committee for purposes of chapter 17.17 of title 23; or |
32 | (D) A hospital, for reporting of health care-associated adverse events for purposes § 23- |
33 | 17-40. |
34 | (vi) Information and documents created for purposes of the federal health care quality |
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1 | improvement act of 1986, Pub. L. No. 99-660 (1986), and related regulations; |
2 | (vii) Patient safety work product for purposes of 42 C.F.R. Part 3, established pursuant to |
3 | 42 U.S.C. § 299b-21 through 299b-26; |
4 | (viii) Information that is: |
5 | (A) Deidentified in accordance with the requirements for deidentification set forth in 45 |
6 | C.F.R. Part 164; and |
7 | (B) Derived from any of the health care-related information listed or described in |
8 | subsection (a)(1)(viii)(A) of this section; |
9 | (2) Information originating from, and intermingled to be indistinguishable with, |
10 | information under subsection (a)(1) of this section that is maintained by: |
11 | (i) A covered entity or business associate as defined by the health insurance portability and |
12 | accountability act of 1996 and related regulations; |
13 | (ii) A health care facility or health care provider; or |
14 | (iii) A program or a qualified service organization as defined by 42 C.F.R. Part 2, |
15 | established pursuant to 42 U.S.C. § 290dd-2; |
16 | (3) Information used only for public health activities and purposes as described in 45 C.F.R. |
17 | Sec. 164.512 or that is part of a limited data set, as defined, and is used, disclosed, and maintained |
18 | in the manner required, by 45 C.F.R. § 164.514 or corresponding state law. |
19 | (b) Personal information that is governed by and collected, used, or disclosed pursuant to |
20 | the following regulations, parts, titles, or acts, is exempt from the provisions of this chapter: |
21 | (1) The Gramm-Leach-Bliley Act (15 U.S.C. § 6801 et seq.) and implementing regulations; |
22 | (2) Part C of Title XI of the Social Security Act (42 U.S.C. § 1320d et seq.); |
23 | (3) The Fair Credit Reporting Act (15 U.S.C. § 1681 et seq.); |
24 | (4) The Family Educational Rights and Privacy Act (20 U.S.C. § 1232g; Part 99 of Title |
25 | 34, C.F.R.); |
26 | (5) The Rhode Island health benefit exchange and applicable statutes and regulations, |
27 | including 45 C.F.R. § 155.260 and § 42-157-1 et seq.; or |
28 | (6) Chapter 17.17 of title 23; and |
29 | (7) Privacy rules adopted by the office of the health insurance commissioner. |
30 | (c) The obligations imposed on regulated entities, small businesses, and processors under |
31 | this chapter does not restrict a regulated entity's, small businesses, or processor's ability for |
32 | collection, use, or disclosure of consumer health data to prevent, detect, protect against, or respond |
33 | to security incidents, identity theft, fraud, harassment, malicious or deceptive activities, or any |
34 | activity that is illegal under Rhode Island law or federal law; preserve the integrity or security of |
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1 | systems; or investigate, report, or prosecute those responsible for any such action that is illegal |
2 | under Rhode Island law or federal law. |
3 | (d) If a regulated entity, small business, or processor processes consumer health data |
4 | pursuant to subsection (c) of this section, such entity bears the burden of demonstrating that such |
5 | processing qualifies for the exemption and complies with the requirements of this section. |
6 | 23-101.1-11. Penalties and remedies. |
7 | (a) A person who alleges a violation of this chapter may bring a civil action for appropriate |
8 | injunctive relief and compensatory and punitive damages in the superior court for the county where |
9 | the alleged violation occurred, the county where the complainant resides, or the county where the |
10 | person against whom the civil complaint is filed resides or has their principal place of business. A |
11 | prevailing plaintiff shall be entitled to an award of reasonable attorneys’ fees and costs. |
12 | (b) A violation of this chapter shall also constitute a deceptive trade practice in violation |
13 | of the provisions of chapter 13.1 of title 6, and the attorney general may bring an enforcement |
14 | action over violations of this chapter. |
15 | 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 HEALTH AND GENDER- | |
AFFIRMING HEALTHCARE DATA PRIVACY ACT | |
*** | |
1 | This act would create the reproductive health and gender-affirming healthcare data privacy |
2 | act. This act would further protect reproductive and gender-affirming care data. The act would |
3 | require the holders of such data, with certain exceptions, obtain consent from a consumer before |
4 | collecting the data. The act would prohibit the sale of the data without the permission of the |
5 | consumer. The act contains several enforcement mechanisms to ensure compliance with the law, |
6 | including an individual cause of action and authority for the attorney general to bring enforcement |
7 | of an action. |
8 | This act would take effect upon passage. |
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