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4 | 4 | | |
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5 | 5 | | 2025 -- S 0824 |
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6 | 6 | | ======== |
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7 | 7 | | LC002361 |
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8 | 8 | | ======== |
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9 | 9 | | S T A T E O F R H O D E I S L A N D |
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10 | 10 | | IN GENERAL ASSEMBLY |
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11 | 11 | | JANUARY SESSION, A.D. 2025 |
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12 | 12 | | ____________ |
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13 | 13 | | |
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14 | 14 | | A N A C T |
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15 | 15 | | RELATING TO HEALTH AND SAFETY -- REPRODUCTIVE FREEDOM AND GENDER |
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16 | 16 | | AFFIRMING CARE HEALTH DATA PRIVACY ACT |
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17 | 17 | | Introduced By: Senators LaMountain, Lawson, Murray, DiPalma, Gu, Sosnowski, Urso, |
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18 | 18 | | Bissaillon, McKenney, and Vargas |
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19 | 19 | | Date Introduced: March 14, 2025 |
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20 | 20 | | Referred To: Senate Judiciary |
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21 | 21 | | |
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22 | 22 | | |
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23 | 23 | | It is enacted by the General Assembly as follows: |
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24 | 24 | | SECTION 1. Title 23 of the General Laws entitled "HEALTH AND SAFETY" is hereby 1 |
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25 | 25 | | amended by adding thereto the following chapter: 2 |
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26 | 26 | | CHAPTER 101.1 3 |
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27 | 27 | | REPRODUCTIVE FREEDOM AND GENDER -AFFIRMING CARE HEALTH DATA 4 |
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28 | 28 | | PRIVACY ACT 5 |
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29 | 29 | | 23-101.1-1. Title. 6 |
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30 | 30 | | This act shall be known and may be cited as the “Reproductive Freedom and Gender-7 |
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31 | 31 | | Affirming Care Data Privacy Act.” 8 |
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32 | 32 | | 23-101.1-2. Definitions. 9 |
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33 | 33 | | As used in this chapter: 10 |
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34 | 34 | | (1) "Abortion" means the termination of a pregnancy for purposes other than producing a 11 |
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35 | 35 | | live birth. 12 |
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36 | 36 | | (2) "Affiliate" means a legal entity that shares common branding with another legal entity 13 |
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37 | 37 | | and controls, is controlled by, or is under common control with another legal entity. For the 14 |
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38 | 38 | | purposes of this definition, "control" or "controlled" means: 15 |
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39 | 39 | | (i) Ownership of, or the power to vote, more than fifty percent (50%) of the outstanding 16 |
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40 | 40 | | shares of any class of voting security of a company; 17 |
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41 | 41 | | (ii) Control in any manner over the election of a majority of the directors or of individuals 18 |
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42 | 42 | | |
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43 | 43 | | |
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44 | 44 | | LC002361 - Page 2 of 17 |
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45 | 45 | | exercising similar functions; or 1 |
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46 | 46 | | (iii) The power to exercise controlling influence over the management of a company. 2 |
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47 | 47 | | (3) "Authenticate" means to use reasonable means to determine that a request to exercise 3 |
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48 | 48 | | any of the rights afforded in this chapter is being made by, or on behalf of, the consumer who is 4 |
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49 | 49 | | entitled to exercise such consumer rights with respect to the consumer health data at issue. 5 |
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50 | 50 | | (4) "Biometric data" means data that is generated from the measurement or technological 6 |
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51 | 51 | | processing of an individual's physiological, biological, or behavioral characteristics and that 7 |
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52 | 52 | | identifies a consumer, whether individually or in combination with other data. Biometric data 8 |
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53 | 53 | | includes, but is not limited to: 9 |
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54 | 54 | | (i) Imagery of the iris, retina, fingerprint, face, hand, palm, vein patterns, and voice 10 |
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55 | 55 | | recordings, from which an identifier template can be extracted; or 11 |
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56 | 56 | | (ii) Keystroke patterns or rhythms and gait patterns or rhythms that contain identifying 12 |
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57 | 57 | | information. 13 |
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58 | 58 | | (5) "Collect" means to buy, rent, access, retain, receive, acquire, infer, derive, or otherwise 14 |
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59 | 59 | | process consumer health data in any manner, including receiving the data from the individual, either 15 |
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60 | 60 | | actively or passively, or by observing or tracking the individual’s online activity or precise location. 16 |
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61 | 61 | | (6)(i) "Consent" means a clear affirmative act that signifies a consumer's freely given, 17 |
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62 | 62 | | specific, informed, opt-in, voluntary, and unambiguous agreement, which may include written 18 |
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63 | 63 | | consent provided by electronic means, provided: 19 |
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64 | 64 | | (A) The request is provided to the consumer in a clear and conspicuous stand-alone 20 |
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65 | 65 | | disclosure; 21 |
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66 | 66 | | (B) The request includes a description of the processing purpose for which the consumer’s 22 |
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67 | 67 | | consent is sought and clearly states the specific categories of personal data that the regulated entity 23 |
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68 | 68 | | intends to collect, process, or transfer; 24 |
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69 | 69 | | (C) The request is made available to the consumer in each language in which the regulated 25 |
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70 | 70 | | entity provides a product or service for which authorization is sought and, in a manner, reasonably 26 |
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71 | 71 | | accessible to consumers with disabilities. 27 |
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72 | 72 | | (ii) "Consent" may not be obtained by: 28 |
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73 | 73 | | (A) A consumer's acceptance of a general or broad terms of use agreement or a similar 29 |
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74 | 74 | | document that contains descriptions of personal data processing along with other unrelated 30 |
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75 | 75 | | information; 31 |
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76 | 76 | | (B) A consumer hovering over, muting, pausing, or closing a given piece of content; 32 |
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77 | 77 | | (C) A consumer's agreement obtained through the use of deceptive designs; or, 33 |
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78 | 78 | | (D) Inference from the inaction of a consumer or the consumer’s continued use of a service 34 |
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79 | 79 | | |
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80 | 80 | | |
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81 | 81 | | LC002361 - Page 3 of 17 |
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82 | 82 | | or product provided by the regulated entity. 1 |
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83 | 83 | | (7) "Consumer" means a natural person who is: 2 |
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84 | 84 | | (i) A Rhode Island resident, or a natural person whose consumer health data is collected 3 |
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85 | 85 | | while present in Rhode Island; and 4 |
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86 | 86 | | (ii) Is acting only in an individual or household context, however identified, including by 5 |
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87 | 87 | | any unique identifier. "Consumer" does not include an individual acting in an employment context. 6 |
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88 | 88 | | (8) "Consumer health data" means: 7 |
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89 | 89 | | (i)(A) A consumer’s gender-affirming care information; 8 |
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90 | 90 | | (B) A consumer’s reproductive or sexual health information; or 9 |
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91 | 91 | | (ii) Any information that a regulated entity or a small business, or their respective 10 |
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92 | 92 | | processor, processes to associate or identify a consumer with the data described in subsection (8)(i) 11 |
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93 | 93 | | of this section that is derived or extrapolated from information that is not consumer health data to 12 |
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94 | 94 | | include, but not limited to, as proxy, derivative, inferred, or emergent data by any means, including 13 |
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95 | 95 | | algorithms or machine learning. 14 |
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96 | 96 | | (iii) "Consumer health data" does not include personal information that is used to engage 15 |
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97 | 97 | | in public or peer-reviewed scientific, historical, or statistical research in the public interest that 16 |
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98 | 98 | | adheres to all other applicable ethics and privacy laws and is approved, monitored, and governed 17 |
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99 | 99 | | by an institutional review board, human subjects research ethics review board, or a similar 18 |
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100 | 100 | | independent oversight entity that determines that the regulated entity or the small business has 19 |
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101 | 101 | | implemented reasonable safeguards to mitigate privacy risks associated with research, including 20 |
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102 | 102 | | any risks associated with reidentification. 21 |
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103 | 103 | | (9) "Deceptive design" means a user interface designed or manipulated with the effect of 22 |
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104 | 104 | | subverting or impairing user autonomy, decision making, or choice. 23 |
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105 | 105 | | (10) "Deidentified data" means data that cannot reasonably be used to infer information 24 |
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106 | 106 | | about, or otherwise be linked to, an identified or identifiable consumer, or a device linked to such 25 |
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107 | 107 | | consumer, if the regulated entity or the small business that possesses such data: 26 |
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108 | 108 | | (i) Takes reasonable measures to ensure that such data cannot be associated with a 27 |
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109 | 109 | | consumer; 28 |
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110 | 110 | | (ii) Publicly commits to process such data only in a deidentified fashion and not attempt to 29 |
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111 | 111 | | reidentify such data; and 30 |
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112 | 112 | | (iii) Contractually obligates any recipients of such data to satisfy the criteria set forth in 31 |
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113 | 113 | | this chapter. 32 |
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114 | 114 | | (11) "Gender-affirming care information" means personal information relating to seeking 33 |
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115 | 115 | | or obtaining past, present, or future gender-affirming care services. "Gender-affirming care 34 |
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116 | 116 | | |
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117 | 117 | | |
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118 | 118 | | LC002361 - Page 4 of 17 |
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119 | 119 | | information" includes, but is not limited to: 1 |
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120 | 120 | | (i) Precise location information that could reasonably indicate a consumer's attempt to 2 |
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121 | 121 | | acquire or receive gender-affirming care services; 3 |
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122 | 122 | | (ii) Efforts to research or obtain gender-affirming care services; or 4 |
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123 | 123 | | (iii) Any gender-affirming care information that is derived, extrapolated, or inferred, 5 |
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124 | 124 | | including from information that is not consumer health data, such as proxy, derivative, inferred, 6 |
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125 | 125 | | emergent, or algorithmic data. 7 |
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126 | 126 | | (12) "Gender-affirming care services" means health services or products that support and 8 |
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127 | 127 | | affirm an individual's gender identity including, but not limited to, psychological, behavioral, 9 |
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128 | 128 | | cosmetic, medical, or surgical interventions. "Gender-affirming care services" includes, but is not 10 |
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129 | 129 | | limited to, treatments for gender dysphoria, gender-affirming hormone therapy, and gender-11 |
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130 | 130 | | affirming surgical procedures. 12 |
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131 | 131 | | (13) "Genetic data" means any data, regardless of its format, that concerns a consumer's 13 |
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132 | 132 | | genetic characteristics. "Genetic data" includes, but is not limited to: 14 |
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133 | 133 | | (i) Raw sequence data that result from the sequencing of a consumer's complete extracted 15 |
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134 | 134 | | deoxyribonucleic acid (DNA) or a portion of the extracted DNA; 16 |
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135 | 135 | | (ii) Genotypic and phenotypic information that results from analyzing the raw sequence 17 |
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136 | 136 | | data; and 18 |
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137 | 137 | | (iii) Self-reported health data that a consumer submits to a regulated entity or a small 19 |
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138 | 138 | | business and that is analyzed in connection with consumer's raw sequence data. 20 |
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139 | 139 | | (14) "Geofence" means technology that uses global positioning coordinates, cell tower 21 |
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140 | 140 | | connectivity, cellular data, radio frequency identification, Wifi data, and/or any other form of 22 |
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141 | 141 | | spatial or location detection to establish a virtual boundary around a specific physical location, or 23 |
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142 | 142 | | to locate a consumer within a virtual boundary. For purposes of this definition, "geofence" means 24 |
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143 | 143 | | a virtual boundary that is two thousand feet (2,000 ft.) or less from the perimeter of the physical 25 |
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144 | 144 | | location. 26 |
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145 | 145 | | (15) "Health care services" means any service provided to a person to assess, measure, 27 |
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146 | 146 | | improve, or learn about a person's mental or physical health including, but not limited to: 28 |
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147 | 147 | | (1) Individual health conditions, status, diseases, or diagnoses; 29 |
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148 | 148 | | (ii) Psychological, behavioral, and medical interventions; 30 |
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149 | 149 | | (iii) Health-related surgeries or procedures; 31 |
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150 | 150 | | (iv) Use or purchase of medication; 32 |
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151 | 151 | | (v) Bodily functions, vital signs, symptoms, or measurements of the information described 33 |
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152 | 152 | | in this subsection; 34 |
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153 | 153 | | |
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154 | 154 | | |
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155 | 155 | | LC002361 - Page 5 of 17 |
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156 | 156 | | (vi) Diagnoses or diagnostic testing, treatment, or medication; 1 |
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157 | 157 | | (vii) Reproductive health care services; or 2 |
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158 | 158 | | (viii) Gender-affirming care services. 3 |
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159 | 159 | | (16) "Homepage" means the introductory page of an Internet website and any Internet 4 |
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160 | 160 | | webpage where personal information is collected. In the case of an online service, such as a mobile 5 |
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161 | 161 | | application, homepage means the application's platform page or download page, and a link within 6 |
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162 | 162 | | the application, such as from the application configuration, "about," "information," or settings page. 7 |
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163 | 163 | | (17) "Person" means, where applicable, natural persons, corporations, trusts, 8 |
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164 | 164 | | unincorporated associations, and partnerships. "Person" does not include government agencies, 9 |
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165 | 165 | | tribal nations, or contracted service providers when processing consumer health data on behalf of 10 |
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166 | 166 | | a government agency. 11 |
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167 | 167 | | (18) "Personal information" means information that identifies or is reasonably capable of 12 |
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168 | 168 | | being associated or linked, directly or indirectly, with a particular consumer. "Personal 13 |
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169 | 169 | | information" includes, but is not limited to, data associated with a persistent unique identifier, such 14 |
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170 | 170 | | as a cookie ID, an IP address, a device identifier, or any other form of persistent unique identifier. 15 |
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171 | 171 | | "Personal information" does not include publicly available information or deidentified data. 16 |
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172 | 172 | | (19) "Precise location information" means information derived from technology including, 17 |
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173 | 173 | | but not limited to, global positioning system level latitude and longitude coordinates or other 18 |
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174 | 174 | | mechanisms, that directly identifies the specific location of an individual with precision and 19 |
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175 | 175 | | accuracy within a radius of one thousand seven hundred and fifty feet (1,750 ft.). "Precise location 20 |
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176 | 176 | | information" does not include the content of communications, or any data generated by or 21 |
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177 | 177 | | connected to advanced utility metering infrastructure systems or equipment for use by a utility. 22 |
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178 | 178 | | (20) "Process" or "processing" means any operation or set of operations performed on 23 |
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179 | 179 | | consumer health data. 24 |
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180 | 180 | | (21) "Processor" means a person that processes consumer health data on behalf of a 25 |
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181 | 181 | | regulated entity or a small business. 26 |
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182 | 182 | | (22) "Publicly available information" means information that: 27 |
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183 | 183 | | (i)(A) Is made available through federal, state, or municipal government records or widely 28 |
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184 | 184 | | distributed media; 29 |
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185 | 185 | | (B) Is released in a disclosure to the general public as required by federal, state, or local 30 |
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186 | 186 | | law; or 31 |
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187 | 187 | | (C) A regulated entity or a small business has a reasonable basis to believe a consumer has 32 |
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188 | 188 | | made available in such a way that the consumer no longer maintains a reasonable expectation of 33 |
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189 | 189 | | privacy in the information. 34 |
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190 | 190 | | |
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191 | 191 | | |
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192 | 192 | | LC002361 - Page 6 of 17 |
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193 | 193 | | (ii) "Publicly available information" does not include any biometric data collected about a 1 |
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194 | 194 | | consumer by a business without the consumer's consent or publicly available information combined 2 |
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195 | 195 | | or intermixed with personal information. 3 |
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196 | 196 | | (23) "Regulated entity" means any legal entity that: 4 |
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197 | 197 | | (i) Provides health care services in Rhode Island, or produces or provides health care 5 |
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198 | 198 | | services that are targeted to consumers in Rhode Island; 6 |
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199 | 199 | | (ii) Alone or jointly with others, determines the purpose and means of collecting, 7 |
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200 | 200 | | processing, sharing, or selling of consumer health data; 8 |
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201 | 201 | | (iii) Collects consumer health data directly from consumers. "Regulated entity" does not 9 |
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202 | 202 | | mean government agencies, tribal nations, or contracted service providers when processing 10 |
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203 | 203 | | consumer health data on behalf of the government agency. 11 |
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204 | 204 | | (24) "Reproductive or sexual health information" means personal information relating to 12 |
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205 | 205 | | seeking or obtaining past, present, or future reproductive or sexual health services. "Reproductive 13 |
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206 | 206 | | or sexual health information" includes, but is not limited to: 14 |
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207 | 207 | | (i) Precise location information that could reasonably indicate a consumer's attempt to 15 |
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208 | 208 | | acquire or receive reproductive or sexual health services; 16 |
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209 | 209 | | (ii) Efforts to research or obtain reproductive or sexual health services; or 17 |
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210 | 210 | | (iii) Any reproductive or sexual health information that is derived, extrapolated, or inferred, 18 |
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211 | 211 | | including from nonhealth information (such as proxy, derivative, inferred, emergent, or algorithmic 19 |
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212 | 212 | | data). 20 |
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213 | 213 | | (25) "Reproductive or sexual health services" means health services or products that 21 |
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214 | 214 | | support or relate to a consumer's reproductive system or sexual well-being including, but not limited 22 |
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215 | 215 | | to: 23 |
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216 | 216 | | (i) Individual health conditions, status, diseases, or diagnoses; 24 |
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217 | 217 | | (ii) Psychological, behavioral, and medical interventions; 25 |
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218 | 218 | | (iii) Health-related surgeries or procedures including, but not limited to, abortions; 26 |
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219 | 219 | | (iv) Use or purchase of medication including, but not limited to, medications for the 27 |
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220 | 220 | | purposes of abortion; 28 |
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221 | 221 | | (v) Bodily functions, vital signs, symptoms, or measurements of the information described 29 |
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222 | 222 | | in this subsection; 30 |
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223 | 223 | | (vi) Diagnoses or diagnostic testing, treatment, or medication; and 31 |
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224 | 224 | | (vii) Medical or nonmedical services related to and provided in conjunction with an 32 |
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225 | 225 | | abortion including, but not limited to, associated diagnostics, counseling, supplies, and follow-up 33 |
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226 | 226 | | services. 34 |
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227 | 227 | | |
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228 | 228 | | |
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229 | 229 | | LC002361 - Page 7 of 17 |
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230 | 230 | | (26)(i) "Sell" or "sale" means the exchange of consumer health data for monetary or other 1 |
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231 | 231 | | valuable consideration. 2 |
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232 | 232 | | (ii) "Sell" or "sale" does not include the exchange of consumer health data for monetary or 3 |
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233 | 233 | | other valuable consideration: 4 |
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234 | 234 | | (A) To a third party as an asset that is part of a merger, acquisition, bankruptcy, or other 5 |
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235 | 235 | | transaction in which the third party assumes control of all or part of the regulated entity's or the 6 |
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236 | 236 | | small business's assets that complies with the requirements and obligations in this chapter, but only 7 |
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237 | 237 | | if the regulated entity, in a reasonable time before the exchange, provides the affected consumer 8 |
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238 | 238 | | with both of the following: 9 |
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239 | 239 | | (I) A notice describing the transfer, including the name of the entity receiving the 10 |
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240 | 240 | | individual's consumer health data and the applicable privacy policies of the entity; and 11 |
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241 | 241 | | (II) A reasonable opportunity to withdraw previously provided consent related to the 12 |
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242 | 242 | | individual's consumer health data and request the deletion of the individual's consumer health data; 13 |
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243 | 243 | | or 14 |
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244 | 244 | | (B) By a regulated entity or a small business to a processor when such exchange is 15 |
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245 | 245 | | consistent with the purpose for which the consumer health data was collected and disclosed to the 16 |
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246 | 246 | | consumer. 17 |
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247 | 247 | | (C) If the exchange is of publicly available information. 18 |
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248 | 248 | | (27)(i) "Share" or "sharing" means to release, disclose, disseminate, divulge, make 19 |
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249 | 249 | | available, provide access to, license, or otherwise communicate orally, in writing, or by electronic 20 |
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250 | 250 | | or other means, consumer health data by a regulated entity or a small business to a third party or 21 |
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251 | 251 | | affiliate. “Share” includes “sell.” 22 |
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252 | 252 | | (ii) The term "share" or "sharing" does not include: 23 |
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253 | 253 | | (A) The disclosure of consumer health data by a regulated entity or a small business to a 24 |
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254 | 254 | | processor when such sharing is to provide goods or services in a manner consistent with the purpose 25 |
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255 | 255 | | for which the consumer health data was collected and disclosed to the consumer; 26 |
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256 | 256 | | (B) The disclosure of consumer health data to a third party with whom the consumer has a 27 |
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257 | 257 | | direct relationship when: 28 |
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258 | 258 | | (I) The disclosure is for purposes of providing a product or service requested by the 29 |
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259 | 259 | | consumer; 30 |
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260 | 260 | | (II) The regulated entity or the small business maintains control and ownership of the data; 31 |
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261 | 261 | | and 32 |
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262 | 262 | | (III) The third party uses the consumer health data only at direction from the regulated 33 |
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263 | 263 | | entity or the small business and consistent with the purpose for which it was collected and consented 34 |
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264 | 264 | | |
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265 | 265 | | |
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266 | 266 | | LC002361 - Page 8 of 17 |
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267 | 267 | | to by the consumer; or 1 |
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268 | 268 | | (C) The disclosure or transfer of personal data to a third party as an asset that is part of a 2 |
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269 | 269 | | merger, acquisition, bankruptcy, or other transaction in which the third party assumes control of all 3 |
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270 | 270 | | or part of the regulated entity's or the small business's assets and complies with the requirements 4 |
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271 | 271 | | and obligations in this chapter. 5 |
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272 | 272 | | (28) "Small business" means a regulated entity that satisfies one or both of the following 6 |
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273 | 273 | | thresholds: 7 |
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274 | 274 | | (i) Collects, processes, sells, or shares consumer health data of fewer than one hundred 8 |
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275 | 275 | | thousand (100,000) consumers during a calendar year; or 9 |
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276 | 276 | | (b) Derives less than fifty percent (50%) of gross revenue from the collection, processing, 10 |
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277 | 277 | | selling, or sharing of consumer health data, and controls, processes, sells, or shares consumer health 11 |
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278 | 278 | | data of fewer than twenty-five thousand (25,000) consumers. 12 |
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279 | 279 | | (29) "Third party" means an entity other than a consumer, regulated entity, processor, small 13 |
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280 | 280 | | business, or affiliate of the regulated entity or the small business. 14 |
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281 | 281 | | 23-101.1-3. Consumer health data privacy policy. 15 |
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282 | 282 | | (a)(1) A regulated entity, by January 1, 2026, and a small business, by April 1, 2026, shall 16 |
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283 | 283 | | maintain a consumer health data privacy policy that clearly and conspicuously discloses: 17 |
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284 | 284 | | (i) The categories of consumer health data collected and the purpose for which the data is 18 |
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285 | 285 | | collected, including how the data will be used; 19 |
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286 | 286 | | (ii) The categories of sources from which the consumer health data is collected; 20 |
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287 | 287 | | (iii) The categories of consumer health data that is shared; 21 |
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288 | 288 | | (iv) A list of the categories of third parties and specific affiliates with whom the regulated 22 |
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289 | 289 | | entity or the small business shares the consumer health data; and 23 |
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290 | 290 | | (v) How a consumer can exercise the rights provided in § 23-101.1-5. 24 |
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291 | 291 | | (2) A regulated entity and a small business shall prominently publish a link to its consumer 25 |
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292 | 292 | | health data privacy policy on its homepage. 26 |
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293 | 293 | | (3) A regulated entity or a small business may not collect, use, or share additional 27 |
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294 | 294 | | categories of consumer health data not disclosed in the consumer health data privacy policy without 28 |
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295 | 295 | | first disclosing the additional categories and obtaining the consumer's affirmative consent prior to 29 |
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296 | 296 | | the collection, use, or sharing of such consumer health data. 30 |
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297 | 297 | | (4) A regulated entity or a small business may not collect, use, or share consumer health 31 |
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298 | 298 | | data for additional purposes not disclosed in the consumer health data privacy policy without first 32 |
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299 | 299 | | disclosing the additional purposes and obtaining the consumer's affirmative consent prior to the 33 |
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300 | 300 | | collection, use, or sharing of such consumer health data. 34 |
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301 | 301 | | |
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302 | 302 | | |
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303 | 303 | | LC002361 - Page 9 of 17 |
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304 | 304 | | (5) It is a violation of this chapter for a regulated entity or a small business to contract with 1 |
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305 | 305 | | a processor to process consumer health data in a manner that is inconsistent with the regulated 2 |
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306 | 306 | | entity's or the small business's consumer health data privacy policy. 3 |
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307 | 307 | | 23-101.1-4. Collection or sharing of consumer health data. 4 |
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308 | 308 | | (a)(1) A regulated entity, by January 1, 2026, and a small business, by April 1, 2026, shall 5 |
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309 | 309 | | not collect or share any consumer health data, including the sale of consumer health data, except: 6 |
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310 | 310 | | (i) With consent from the consumer for such collection for a specified purpose; and 7 |
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311 | 311 | | (ii) If the consumer health data is collected or shared only for one or more of the following 8 |
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312 | 312 | | permissible purposes: 9 |
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313 | 313 | | (A) As necessary to provide a product, service, or service feature to the individual to whom 10 |
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314 | 314 | | the consumer health data pertains when requested by that individual. 11 |
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315 | 315 | | (B) To initiate, manage, execute, or complete a financial or commercial transaction or to 12 |
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316 | 316 | | fulfill an order for a specific product or service requested by an individual to whom the consumer 13 |
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317 | 317 | | health data pertains including, but not limited to, associated routine administrative, operational, and 14 |
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318 | 318 | | account servicing activity such as billing, shipping, storage, and accounting. 15 |
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319 | 319 | | (C) To comply with an obligation under a law of this state or federal law. 16 |
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320 | 320 | | (D) To protect public safety or public health. 17 |
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321 | 321 | | (E) To prevent, detect, protect against, or respond to a security incident, identity theft, 18 |
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322 | 322 | | fraud, harassment, malicious or deceptive activities, or activities that are illegal under the laws of 19 |
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323 | 323 | | this state. 20 |
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324 | 324 | | (F) To preserve the integrity or security of systems. 21 |
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325 | 325 | | (G) To investigate, report, or prosecute persons responsible for activities that are illegal 22 |
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326 | 326 | | under the laws of this state. 23 |
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327 | 327 | | (2) Consent required under this section shall be obtained prior to the collection or sharing, 24 |
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328 | 328 | | as applicable, of any consumer health data, and the request for consent shall clearly and 25 |
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329 | 329 | | conspicuously disclose: 26 |
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330 | 330 | | (i) The categories of consumer health data collected or shared; 27 |
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331 | 331 | | (ii) The purpose of the collection or sharing of the consumer health data, including the 28 |
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332 | 332 | | specific ways in which it will be used; 29 |
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333 | 333 | | (iii) The categories of entities with whom the consumer health data is shared; and 30 |
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334 | 334 | | (iv) How the consumer can withdraw consent from future collection or sharing of the 31 |
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335 | 335 | | consumer's health data. 32 |
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336 | 336 | | (3) A regulated entity or a small business shall not unlawfully discriminate against a 33 |
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337 | 337 | | consumer for exercising any rights included in this chapter. 34 |
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338 | 338 | | |
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339 | 339 | | |
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340 | 340 | | LC002361 - Page 10 of 17 |
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341 | 341 | | 23-101.1-5. Consumer rights and requests -- Refusal -- Appeal. 1 |
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342 | 342 | | (a)(1) A consumer has the right to confirm whether a regulated entity or a small business 2 |
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343 | 343 | | is collecting, sharing, or selling consumer health data concerning the consumer and to access such 3 |
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344 | 344 | | data, including a list of all third parties and affiliates with whom the regulated entity or the small 4 |
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345 | 345 | | business has shared or sold the consumer health data and an active email address or other online 5 |
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346 | 346 | | mechanism that the consumer may use to contact these third parties. 6 |
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347 | 347 | | (2) A consumer has the right to withdraw consent from the regulated entity's or the small 7 |
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348 | 348 | | business's collection and sharing of consumer health data concerning the consumer. 8 |
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349 | 349 | | (3) A consumer has the right to have consumer health data concerning the consumer deleted 9 |
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350 | 350 | | and may exercise that right by informing the regulated entity or the small business of the consumer's 10 |
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351 | 351 | | request for deletion. 11 |
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352 | 352 | | (i) A regulated entity or a small business that receives a consumer's request to delete any 12 |
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353 | 353 | | consumer health data concerning the consumer shall: 13 |
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354 | 354 | | (A) Delete the consumer health data from its records, including from all parts of the 14 |
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355 | 355 | | regulated entity's or the small business's network, including archived or backup systems pursuant 15 |
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356 | 356 | | subsection (a)(3)(B)(iii) of this section; and 16 |
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357 | 357 | | (B) Notify all affiliates, processors, contractors, and other third parties with whom the 17 |
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358 | 358 | | regulated entity or the small business has shared consumer health data of the deletion request. 18 |
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359 | 359 | | (ii) All affiliates, processors, contractors, and other third parties that receive notice of a 19 |
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360 | 360 | | consumer's deletion request shall honor the consumer's deletion request and delete the consumer 20 |
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361 | 361 | | health data from its records, subject to the requirements of this chapter. 21 |
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362 | 362 | | (iii) If consumer health data that a consumer requests to be deleted is stored on archived or 22 |
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363 | 363 | | backup systems, then the request for deletion may be delayed to enable restoration of the archived 23 |
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364 | 364 | | or backup systems; provided that, such delay may not exceed six (6) months from authenticating 24 |
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365 | 365 | | the deletion request. 25 |
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366 | 366 | | (4) A consumer may exercise the rights set forth in this chapter by submitting a request, at 26 |
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367 | 367 | | any time, to a regulated entity or a small business. Such a request may be made by a secure and 27 |
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368 | 368 | | reliable means established by the regulated entity or the small business and described in its 28 |
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369 | 369 | | consumer health data privacy policy. The method shall take into account the ways in which 29 |
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370 | 370 | | consumers normally interact with the regulated entity or the small business, the need for secure and 30 |
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371 | 371 | | reliable communication of such requests, and the ability of the regulated entity or the small business 31 |
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372 | 372 | | to authenticate the identity of the consumer making the request. A regulated entity or a small 32 |
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373 | 373 | | business shall not require a consumer to create a new account in order to exercise consumer rights 33 |
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374 | 374 | | pursuant to this chapter but may require a consumer to use an existing account. 34 |
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375 | 375 | | |
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376 | 376 | | |
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377 | 377 | | LC002361 - Page 11 of 17 |
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378 | 378 | | (5) If a regulated entity or a small business is unable to authenticate the request using 1 |
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379 | 379 | | commercially reasonable efforts, the regulated entity or the small business shall not be required to 2 |
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380 | 380 | | comply with a request to initiate an action under this section and may request that the consumer 3 |
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381 | 381 | | provide additional information reasonably necessary to authenticate the consumer and the 4 |
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382 | 382 | | consumer's request. 5 |
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383 | 383 | | (6) Information provided in response to a consumer request shall be provided by a regulated 6 |
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384 | 384 | | entity and a small business free of charge, up to twice annually per consumer. If requests from a 7 |
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385 | 385 | | consumer are manifestly unfounded, excessive, or repetitive, the regulated entity or the small 8 |
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386 | 386 | | business may charge the consumer a reasonable fee to cover the administrative costs of complying 9 |
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387 | 387 | | with the request or decline to act on the request. The regulated entity and the small business bear 10 |
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388 | 388 | | the burden of demonstrating the manifestly unfounded, excessive, or repetitive nature of the 11 |
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389 | 389 | | request. 12 |
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390 | 390 | | (7) A regulated entity and a small business shall comply with the consumer's requests under 13 |
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391 | 391 | | subsection (a)(1) through (a)(3) of this section within forty-five (45) days of receipt of the request 14 |
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392 | 392 | | submitted pursuant to the methods described in this section. A regulated entity and a small business 15 |
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393 | 393 | | shall promptly take steps to authenticate a consumer request, but this does not extend the regulated 16 |
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394 | 394 | | entity's and the small business's duty to comply with the consumer's request within forty-five (45) 17 |
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395 | 395 | | days of receipt of the consumer's request. The response period may be extended once by forty-five 18 |
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396 | 396 | | (45) additional days when reasonably necessary, taking into account the complexity and number of 19 |
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397 | 397 | | the consumer's requests, so long as the regulated entity or the small business informs the consumer 20 |
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398 | 398 | | of any such extension within the initial forty-five (45)-day response period, together with the reason 21 |
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399 | 399 | | for the extension. 22 |
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400 | 400 | | (b) A regulated entity shall comply with this section by January 1, 2026, and a small 23 |
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401 | 401 | | business shall comply with this section beginning April 1, 2026. 24 |
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402 | 402 | | 23-101.1-6. Data security practices. 25 |
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403 | 403 | | A regulated entity, by January 1, 2026, and a small business, by April 1, 2026, shall: 26 |
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404 | 404 | | (1) Restrict access to consumer health data by the employees, processors, and contractors 27 |
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405 | 405 | | of such regulated entity or small business to only those employees, processors, and contractors for 28 |
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406 | 406 | | which access is necessary to further the purposes for which the consumer provided consent or where 29 |
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407 | 407 | | necessary to provide a product or service that the consumer to whom such consumer health data 30 |
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408 | 408 | | relates has requested from such regulated entity or small business; and 31 |
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409 | 409 | | (2) Establish, implement, and maintain administrative, technical, and physical data security 32 |
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410 | 410 | | practices that, at a minimum, satisfy reasonable standard of care within the regulated entity's or the 33 |
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411 | 411 | | small business's industry to protect the confidentiality, integrity, and accessibility of consumer 34 |
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412 | 412 | | |
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413 | 413 | | |
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414 | 414 | | LC002361 - Page 12 of 17 |
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415 | 415 | | health data appropriate to the volume and nature of the consumer health data at issue. 1 |
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416 | 416 | | 23-101.1-7. Processors. 2 |
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417 | 417 | | (a)(1) Effective January 1, 2026 for a regulated entity, and April 1, 2026 for a small 3 |
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418 | 418 | | business, a processor may process consumer health data only pursuant to a binding contract 4 |
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419 | 419 | | between the processor and the regulated entity or the small business that sets forth the processing 5 |
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420 | 420 | | instructions and limit the actions the processor may take with respect to the consumer health data 6 |
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421 | 421 | | it processes on behalf of the regulated entity or the small business. 7 |
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422 | 422 | | (2) A processor may process consumer health data only in a manner that is consistent with 8 |
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423 | 423 | | the binding instructions set forth in the contract with the regulated entity or the small business. 9 |
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424 | 424 | | (b) A processor shall assist the regulated entity or the small business by appropriate 10 |
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425 | 425 | | technical and organizational measures, insofar as this is possible, in fulfilling the regulated entity's 11 |
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426 | 426 | | and the small business's obligations under this chapter. 12 |
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427 | 427 | | (c) If a processor fails to adhere to the regulated entity's or the small business's instructions 13 |
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428 | 428 | | or processes consumer health data in a manner that is outside the scope of the processor's contract 14 |
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429 | 429 | | with the regulated entity or the small business, the processor is considered a regulated entity or a 15 |
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430 | 430 | | small business with regard to such data and is subject to all the requirements of this chapter with 16 |
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431 | 431 | | regard to such data. 17 |
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432 | 432 | | 23-101.1-8. Valid authorization to sell -- Defects -- Provision to consumer. 18 |
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433 | 433 | | (a) Subject to the requirements of § 23-101.1-4, by January 1, 2026 for a regulated entity 19 |
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434 | 434 | | and April 1, 2026 for a small business, it is unlawful for any person to sell or offer to sell consumer 20 |
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435 | 435 | | health data concerning a consumer without first obtaining valid authorization from the consumer. 21 |
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436 | 436 | | The sale of consumer health data shall be consistent with the valid authorization signed by the 22 |
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437 | 437 | | consumer. This authorization shall be separate and distinct from the consent obtained to collect or 23 |
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438 | 438 | | share consumer health data, as required under § 23-101.1-4. 24 |
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439 | 439 | | (b) A valid authorization to sell consumer health data is a document consistent with this 25 |
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440 | 440 | | section and shall be written in plain language. The valid authorization to sell consumer health data 26 |
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441 | 441 | | shall contain the following: 27 |
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442 | 442 | | (1) The specific consumer health data concerning the consumer that the person intends to 28 |
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443 | 443 | | sell; 29 |
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444 | 444 | | (2) The name and contact information of the person collecting and selling the consumer 30 |
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445 | 445 | | health data; 31 |
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446 | 446 | | (3) The name and contact information of the person purchasing the consumer health data 32 |
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447 | 447 | | from the seller identified in subsection (b)(2) of this section; 33 |
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448 | 448 | | (4) A description of the purpose for the sale, including how the consumer health data shall 34 |
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449 | 449 | | |
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450 | 450 | | |
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451 | 451 | | LC002361 - Page 13 of 17 |
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452 | 452 | | be gathered and how it will be used by the purchaser identified in subsection (b)(3) of this section 1 |
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453 | 453 | | when sold; 2 |
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454 | 454 | | (5) A statement that the provision of goods or services may not be conditioned on the 3 |
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455 | 455 | | consumer signing the valid authorization; 4 |
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456 | 456 | | (6) A statement that the consumer has a right to revoke the valid authorization at any time 5 |
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457 | 457 | | and a description on how to submit a revocation of the valid authorization; 6 |
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458 | 458 | | (7) A statement that the consumer health data sold pursuant to the valid authorization may 7 |
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459 | 459 | | be subject to redisclosure by the purchaser and may no longer be protected by this section; 8 |
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460 | 460 | | (8) An expiration date for the valid authorization that expires one year from when the 9 |
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461 | 461 | | consumer signs the valid authorization; and 10 |
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462 | 462 | | (9) The signature of the consumer and date. 11 |
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463 | 463 | | (c) An authorization is not valid if the document has any of the following defects: 12 |
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464 | 464 | | (i) The expiration date has passed; 13 |
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465 | 465 | | (ii) The authorization does not contain all the information required under this section; 14 |
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466 | 466 | | (iii) The authorization has been revoked by the consumer; 15 |
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467 | 467 | | (iv) The authorization has been combined with other documents to create a compound 16 |
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468 | 468 | | authorization; or 17 |
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469 | 469 | | (v) The provision of goods or services is conditioned on the consumer signing the 18 |
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470 | 470 | | authorization. 19 |
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471 | 471 | | (d) A copy of the signed valid authorization shall be provided to the consumer. 20 |
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472 | 472 | | (e) The seller and purchaser of consumer health data shall retain a copy of all valid 21 |
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473 | 473 | | authorizations for sale of consumer health data for six (6) years from the date of its signature or the 22 |
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474 | 474 | | date when it was last in effect, whichever is later. 23 |
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475 | 475 | | 23-101.1-10. Geofence restrictions. 24 |
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476 | 476 | | It is unlawful for any person to implement a geofence around an entity that provides in-25 |
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477 | 477 | | person health care services where such geofence is used to: 26 |
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478 | 478 | | (1) Identify or track consumers seeking health care services; or, 27 |
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479 | 479 | | (2) Collect consumer health data from consumers. 28 |
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480 | 480 | | 23-101.1-11. Application of consumer protection act. 29 |
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481 | 481 | | The legislature finds that the practices covered by this chapter are matters vitally affecting 30 |
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482 | 482 | | the public interest for the purpose of applying chapter 13.1 of title 6. A violation of this chapter is 31 |
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483 | 483 | | not reasonable in relation to the development and preservation of business, and is an unfair or 32 |
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484 | 484 | | deceptive act in trade or commerce and an unfair method of competition for the purpose of applying 33 |
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485 | 485 | | chapter 13.1 of title 6. 34 |
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486 | 486 | | |
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487 | 487 | | |
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488 | 488 | | LC002361 - Page 14 of 17 |
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489 | 489 | | 23-101.1-12. Exemptions. 1 |
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490 | 490 | | (a) This chapter does not apply to: 2 |
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491 | 491 | | (1) Information that meets the definition of: 3 |
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492 | 492 | | (i) Protected health information for purposes of the federal Health Insurance Portability 4 |
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493 | 493 | | and Accountability Act of 1996, as amended, and related regulations; 5 |
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494 | 494 | | (ii) Health care information collected, used, or disclosed in accordance with chapter 37.3 6 |
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495 | 495 | | of title 5; 7 |
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496 | 496 | | (iii) Patient identifying information collected, used, or disclosed in accordance with 42 8 |
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497 | 497 | | C.F.R. Part 2, established pursuant to 42 U.S.C. Sec. 290dd-2; 9 |
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498 | 498 | | (iv) Identifiable private information for purposes of the federal policy for the protection of 10 |
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499 | 499 | | human subjects, 45 C.F.R. Part 46; identifiable private information that is otherwise information 11 |
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500 | 500 | | collected as part of human subjects research pursuant to the good clinical practice guidelines issued 12 |
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501 | 501 | | by the international council for harmonization; the protection of human subjects under 21 C.F.R. 13 |
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502 | 502 | | Parts 50 and 56; or personal data used or shared in research conducted in accordance with one or 14 |
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503 | 503 | | more of the requirements set forth in this subsection; 15 |
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504 | 504 | | (v) Information and documents created specifically for, and collected and maintained by: 16 |
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505 | 505 | | (A) A quality improvement program for purposes of chapter 17.17 of title 23; 17 |
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506 | 506 | | (B) A peer review committee for purposes of § 23-17-25; 18 |
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507 | 507 | | (C) A quality assurance committee for purposes of chapter 17.17 of title 23; or 19 |
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508 | 508 | | (D) A hospital, for reporting of health care-associated adverse events for purposes of § 23-20 |
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509 | 509 | | 17-40. 21 |
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510 | 510 | | (vi) Information and documents created for purposes of the federal Health Care Quality 22 |
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511 | 511 | | Improvement Act of 1986, and related regulations; 23 |
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512 | 512 | | (vii) Patient safety work product for purposes of 42 C.F.R. Part 3, established pursuant to 24 |
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513 | 513 | | 42 U.S.C. Sec. 299b-21 through 299b-26; 25 |
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514 | 514 | | (viii) Information that is: 26 |
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515 | 515 | | (A) Deidentified in accordance with the requirements for deidentification set forth in 45 27 |
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516 | 516 | | C.F.R. Part 164; and 28 |
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517 | 517 | | (B) Derived from any of the health care-related information listed in subsection (a)(1)(viii) 29 |
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518 | 518 | | of this section; 30 |
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519 | 519 | | (2) Information originating from, and intermingled to be indistinguishable with, 31 |
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520 | 520 | | information under subsection (a)(1) of this section that is maintained by: 32 |
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521 | 521 | | (i) A covered entity or business associate as defined by the federal Health Insurance 33 |
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522 | 522 | | Portability and Accountability Act of 1996, as amended, and related regulations; 34 |
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523 | 523 | | |
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524 | 524 | | |
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525 | 525 | | LC002361 - Page 15 of 17 |
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526 | 526 | | (ii) A health care facility or health care provider; or 1 |
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527 | 527 | | (iii) A program or a qualified service organization as defined by 42 C.F.R. Part 2, 2 |
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528 | 528 | | established pursuant to 42 U.S.C. Sec. 290dd-2; 3 |
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529 | 529 | | (3) Information used only for public health activities and purposes as described in 45 C.F.R. 4 |
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530 | 530 | | Sec. 164.512 or that is part of a limited data set, as defined, and is used, disclosed, and maintained 5 |
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531 | 531 | | in the manner required, by 45 C.F.R. Sec. 164.514 or corresponding state law. 6 |
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532 | 532 | | (b) Personal information that is governed by and collected, used, or disclosed pursuant to 7 |
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533 | 533 | | the following regulations, parts, titles, or acts, is exempt from this chapter: 8 |
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534 | 534 | | (i) The Gramm-Leach-Bliley act (15 U.S.C. 6801 et seq.) and implementing regulations; 9 |
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535 | 535 | | (ii) Part C of Title XI of the Social Security Act (42 U.S.C. 1320d et seq.); 10 |
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536 | 536 | | (iii) The Fair Credit Reporting Act (15 U.S.C. 1681 et seq.); 11 |
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537 | 537 | | (iv) The Family Educational Rights and Privacy Act (20 U.S.C. 1232g; Part 99 of Title 34, 12 |
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538 | 538 | | C.F.R.); 13 |
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539 | 539 | | (v) The Rhode Island health benefit exchange and applicable statutes and regulations, 14 |
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540 | 540 | | including 45 C.F.R. Sec. 155.260 and §§ 42-157-1 et seq.; or 15 |
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541 | 541 | | (vi) Privacy rules adopted by the office of the insurance commissioner. 16 |
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542 | 542 | | (c) The obligations imposed on regulated entities, small businesses, and processors under 17 |
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543 | 543 | | this chapter does not restrict a regulated entity's, small businesses, or processor's ability for 18 |
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544 | 544 | | collection, use, or disclosure of consumer health data to prevent, detect, protect against, or respond 19 |
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545 | 545 | | to security incidents, identity theft, fraud, harassment, malicious or deceptive activities, or any 20 |
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546 | 546 | | activity that is illegal under Rhode Island law or federal law; preserve the integrity or security of 21 |
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547 | 547 | | systems; or investigate, report, or prosecute those responsible for any such action that is illegal 22 |
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548 | 548 | | under Rhode Island law or federal law. 23 |
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549 | 549 | | (4) If a regulated entity, small business, or processor processes consumer health data 24 |
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550 | 550 | | pursuant to subsection (a)(3) of this section, such entity bears the burden of demonstrating that such 25 |
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551 | 551 | | processing qualifies for the exemption and complies with the requirements of this section. 26 |
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552 | 552 | | 23-101.1-13. Penalties and remedies. 27 |
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553 | 553 | | (a) A person who alleges a violation of this chapter may bring a civil action for appropriate 28 |
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554 | 554 | | injunctive relief and compensatory and punitive damages in the superior court for the county where 29 |
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555 | 555 | | the alleged violation occurred, the county where the complainant resides, or the county where the 30 |
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556 | 556 | | person against whom the civil complaint is filed resides or has their principal place of business. A 31 |
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557 | 557 | | prevailing plaintiff shall be entitled to an award of reasonable attorneys’ fees and costs. 32 |
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558 | 558 | | (b) A violation of this chapter shall also constitute a deceptive trade practice in violation 33 |
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559 | 559 | | of chapter 13.1 of title 6, and the attorney general may bring an enforcement action over violations 34 |
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560 | 560 | | |
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561 | 561 | | |
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562 | 562 | | LC002361 - Page 16 of 17 |
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563 | 563 | | of this chapter. 1 |
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564 | 564 | | SECTION 2. This act shall take effect upon passage. 2 |
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565 | 565 | | ======== |
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566 | 566 | | LC002361 |
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567 | 567 | | ======== |
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568 | 568 | | |
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569 | 569 | | |
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570 | 570 | | LC002361 - Page 17 of 17 |
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571 | 571 | | EXPLANATION |
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572 | 572 | | BY THE LEGISLATIVE COUNCIL |
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573 | 573 | | OF |
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574 | 574 | | A N A C T |
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575 | 575 | | RELATING TO HEALTH AND SAFETY -- REPRODUCTIVE FREEDOM AND GENDER |
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576 | 576 | | AFFIRMING CARE HEALTH DATA PRIVACY ACT |
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577 | 577 | | *** |
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578 | 578 | | This act would create the reproductive freedom and gender affirming care health data 1 |
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579 | 579 | | privacy act. 2 |
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580 | 580 | | This act would take effect upon passage. 3 |
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581 | 581 | | ======== |
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582 | 582 | | LC002361 |
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583 | 583 | | ======== |
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584 | 584 | | |
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