SB58INTRODUCED Page 0 SB58 YTEI66N-1 By Senators Orr, Melson RFD: Banking and Insurance First Read: 06-Feb-24 1 2 3 4 5 YTEI66N-1 01/25/2024 JC (L)tgw 2024-10 Page 1 First Read: 06-Feb-24 SYNOPSIS: Existing law does not provide general privacy protections for an individual's DNA. This bill would make it a crime, with exceptions including criminal investigation and certain legal proceedings, to collect, analyze, or transfer an individual's DNA without the individual's express consent. The bill would require notice to an individual of results of a genetic test undergone by the individual when applying for employment, a loan, credit, an educational opportunity, and certain types of insurance. This bill would also prohibit health, life, and long-term care insurers from using the results of an individual's DNA analysis to make coverage and premium decisions, and authorize the Commissioner of Insurance to enforce the prohibition. Section 111.05 of the Constitution of Alabama of 2022, prohibits a general law whose purpose or effect would be to require a new or increased expenditure of local funds from becoming effective with regard to a local governmental entity without enactment by a 2/3 vote unless: it comes within one of a number of specified exemptions; it is approved by the affected entity; or the Legislature appropriates funds, or 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 SB58 INTRODUCED Page 2 entity; or the Legislature appropriates funds, or provides a local source of revenue, to the entity for the purpose. The purpose or effect of this bill would be to require a new or increased expenditure of local funds within the meaning of the section. However, this bill does not require approval of a local government entity or enactment by a 2/3 vote to become effective because it comes within one of the specified exceptions contained in the section. A BILL TO BE ENTITLED AN ACT Relating to genetic privacy; to make it unlawful with certain exceptions to procure, use, or transfer an individual's DNA without the individual's express consent; to provide criminal penalties for violations; to prohibit entities that issue health, life, and long-term care insurance coverage from discriminating against individuals on the basis of genetic test results; and to authorize the Commissioner of Insurance to enforce the prohibition; and in connection therewith would have as its purpose or effect the requirement of a new or increased expenditure of local funds within the meaning of Section 111.05 of the Constitution of Alabama of 2022. BE IT ENACTED BY THE LEGISLATURE OF ALABAMA: 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 SB58 INTRODUCED Page 3 BE IT ENACTED BY THE LEGISLATURE OF ALABAMA: Section 1. For the purposes of Sections 1 and 2, the following terms have the following meanings: (1) DNA ANALYSIS. The medical and biological examination and analysis of an individual's DNA to identify the presence and composition of genes in that individual's body. The term includes DNA typing and genetic testing. (2) DNA SAMPLE. Any human biological specimen from which DNA can be extracted, or the DNA extracted from the specimen. The term does not include a routine chemical, blood, or urine analysis unless conducted for the purpose of DNA analysis. (3) EXCLUSIVE PROPERTY. The right of the individual whose DNA has been extracted or analyzed to exercise control over his or her DNA sample and any results of his or her DNA analysis with regard to the collection, use, retention, maintenance, disclosure, or destruction of the sample or analysis results. (4) EXPRESS CONSENT. An authorization by an individual whose DNA is to be extracted or analyzed, or by that individual's legal guardian or authorized representative, which is memorialized in writing or in an electronic format demonstrating an intentional decision, after the individual receives a clear and prominent disclosure in writing regarding the manner of collection, use, retention, maintenance, or disclosure of a DNA sample or results of a DNA analysis for specified purposes. A single express consent may authorize every instance of a specified purpose or use. Section 2. (a) Except as provided in this section or in 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 SB58 INTRODUCED Page 4 Section 2. (a) Except as provided in this section or in Section 3, an individual may only perform a DNA analysis with express consent. The results of a DNA analysis, whether held by a public or private entity, are the exclusive property of the individual tested, are confidential, and may not be disclosed without express consent. (b) A person who performs a DNA analysis or receives records, results, or findings of a DNA analysis shall provide the individual tested with notice in writing that the analysis was performed or that the records, results, or findings were received. The notice shall state any of the following that may be applicable under the express consent given by the individual: (1) That upon the written request of the individual tested, the information will be made available to his or her physician. (2)a. That if the DNA sample was taken and the DNA analysis was performed as part of the individual's application for an educational opportunity, employment, loan, mortgage, credit, or insurance other than health insurance, life insurance, or long-term care insurance, the notice shall state that the results of the DNA analysis were used in a decision to grant or deny the individual's application for any of the same. b. That if the information was used in any decision that resulted in a denial, the analysis shall be repeated to verify the accuracy of the first analysis, and if the first analysis is found to be inaccurate, the denial shall be reviewed. 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 100 101 102 103 104 105 106 107 108 109 110 111 112 SB58 INTRODUCED Page 5 reviewed. (c) This act does not apply to the collection of a DNA sample, performance of a DNA analysis, or the results of a DNA analysis used for the purposes of any of the following: (1) Criminal investigation or prosecution. (2) Compliance with a subpoena, summons, or other lawful court order. (3) Compliance with federal law. (4) Medical diagnosis, conducting quality assessments, improvement activities, or treatment of a patient when either of the following are true: a. Express consent for clinical laboratory analysis of the DNA sample was obtained by the health care practitioner who collected the DNA sample. b. The medical diagnosis, quality assessments, improvement activities, or treatment of a patient was performed by a clinical laboratory certified by the Centers for Medicare and Medicaid Services. (5) Determination of paternity pursuant to Chapter 17 of Title 26 of the Code of Alabama 1975, or custody pursuant to Chapter 3 of Title 30 of the Code of Alabama 1975. (6) Any purpose authorized pursuant to Article 2 of Chapter 18 of Title 36, Code of Alabama 1975, or Section 12-15-135, Code of Alabama 1975. (7) Conducting research, and designing and preparing the research, subject to the requirements of, and in compliance with, 21 C.F.R. Parts 50 and 56, and 45 C.F.R. Parts 46, 160, and 164; or using information that is deidentified consistent with 45 C.F.R. Parts 160 and 164 and 113 114 115 116 117 118 119 120 121 122 123 124 125 126 127 128 129 130 131 132 133 134 135 136 137 138 139 140 SB58 INTRODUCED Page 6 deidentified consistent with 45 C.F.R. Parts 160 and 164 and that is originally collected and maintained for research subject to the requirements of, and in compliance with, 21 C.F.R. Parts 50 and 56, and 45 C.F.R. Parts 46, 160, and 164. Section 3. (a)(1) It is unlawful for a person to willfully, and without express consent, collect or retain an individual's DNA sample with the intent to perform DNA analysis. (2) A violation of this subsection is a Class A misdemeanor. (b)(1) It is unlawful for a person to willfully, and without express consent, submit an individual's DNA sample for DNA analysis or analyze an individual's DNA sample or arrange for the analysis of the same. (2) A violation of this subsection is a Class D felony. (c)(1) It is unlawful for a person to willfully, and without express consent, disclose an individual's DNA analysis results to a third party. (2) A violation of this subsection is a Class D felony. (3) It is not a violation of this subsection to disclose an individual's DNA analysis results if the results were previously voluntarily disclosed by either the individual whose DNA was analyzed or his or her legal guardian or authorized representative. (d)(1) It is unlawful for a person to willfully, and without express consent, sell or otherwise transfer an individual's DNA sample or the results of an individual's DNA analysis to a third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with 141 142 143 144 145 146 147 148 149 150 151 152 153 154 155 156 157 158 159 160 161 162 163 164 165 166 167 168 SB58 INTRODUCED Page 7 sample was originally collected, retained, or analyzed with express consent. (2) A violation of this subsection is a Class C felony. (e) Each instance of collection or retention, submission or analysis, or disclosure, sale, or transfer in violation of this section constitutes a separate violation for which a separate penalty is authorized. Section 4. (a) For the purposes of this section, the following terms have the following meanings: (1) DNA Analysis. The same meaning as in Section 1 of this act. (2) GENETIC INFORMATION. Information derived from DNA analysis to determine the presence or absence of a scientifically identifiable gene, chromosome, or mutation, including carrier status, in an individual's DNA sample which is believed to cause a disease, disorder, or syndrome, or is associated with a statistically increased risk of developing the disease, disorder, or syndrome, for which the individual is asymptomatic at the time the DNA sample was taken. (3) HEALTH INSURER. Any person that offers for sale or administers a health insurance plan in this state, or contracts with health care providers to furnish specified health care services including hospital, physician, and medical treatment to enrollees covered under a health insurance plan, including preferred provider policies and health maintenance organization subscriber contracts. (4) LIFE INSURER. Any person that offers or administers contracts that pay money to a designated beneficiary in one lump sum or in installments upon the death of the insured, 169 170 171 172 173 174 175 176 177 178 179 180 181 182 183 184 185 186 187 188 189 190 191 192 193 194 195 196 SB58 INTRODUCED Page 8 lump sum or in installments upon the death of the insured, including annuity contracts, combined life and health and accident insurance, and including but not limited to those policies regulated by Chapters 15, 16, and 18 of Title 27, Code of Alabama 1975. (5) LONG-TERM CARE INSURER. Any person that offers or administers long-term care insurance policies as defined in Section 27-19-103, Code of Alabama 1975. (b)(1) In the absence of a diagnosis of a condition related to genetic information, a health insurer, life insurer, or long-term care insurer authorized to transact business in this state may not cancel, limit, or deny coverage, or establish differentials in premium rates, based on the information. (2) A health insurer, life insurer, or long-term care insurer may not require or solicit genetic information, use the results of DNA analysis, or consider an individual's decisions or actions relating to DNA analysis or genetic information provided to the individual in any manner for any insurance purpose. (3) This section does not apply to the underwriting or issuance of an accident-only policy, dental policy, vision policy, or supplemental insurance such as a hospital indemnity or fixed indemnity policy, or any other actions of an insurer directly related to an accident-only policy, dental policy, vision policy, or supplemental insurance such as a hospital indemnity or fixed indemnity policy. (4) Nothing in this section shall be construed as preventing a health insurer, life insurer, or long-term care 197 198 199 200 201 202 203 204 205 206 207 208 209 210 211 212 213 214 215 216 217 218 219 220 221 222 223 224 SB58 INTRODUCED Page 9 preventing a health insurer, life insurer, or long-term care insurer from accessing an individual's medical record as part of an application exam. Nothing in this section prohibits a health insurer, life insurer, or long-term care insurer from considering a medical diagnosis included in an individual's medical record, even if a diagnosis was made based on the results of a DNA analysis. (c) A certificate of authority issued by the Department of Insurance to an insurer is subject to suspension, revocation, or other administrative penalty provided by law at the discretion of the Commissioner of Insurance for any violation of this section. Section 5. Although this bill would have as its purpose or effect the requirement of a new or increased expenditure of local funds, this bill is excluded from further requirements and application under Section 111.05 of the Constitution of Alabama 2022, because the bill defines a new crime or amends the definition of an existing crime. Section 6. This act shall become effective on October 1, 2024. 225 226 227 228 229 230 231 232 233 234 235 236 237 238 239 240 241 242 243