Privacy
Rules concerning the privacy and confidentiality of genetic information.
Records grouped under the same topic may offer different rights and protections.
This database: 4 records
NHGRI database archive: 427 records
Records about privacy
Showing 20 of 431; records from this database appear first.
| Jurisdiction | Law or policy | Topics | Status | Summary |
|---|---|---|---|---|
| New York | Confidentiality of records of genetic testsWho Owns Your DNA?StatutePrimary source | Privacy, Research | Statute | New York Civil Rights Law section 79-l generally requires written informed consent before a genetic test is performed and before results are disclosed. It also treats genetic-test records and results as confidential and regulates the retention, research use, and destruction of biological samples. |
| Alabama | Genetic privacy and insurance protectionsWho Owns Your DNA?Legislation · Last action: February 6, 2024Primary source | Privacy, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination | Died | Alabama SB 58 did not become law. It would have required express consent for collecting, analyzing, using, retaining, or transferring DNA, declared DNA analysis results to be the individual's exclusive property and confidential, and restricted some insurer uses of genetic information. |
| Alabama | Unlawful use of DNAWho Owns Your DNA?Legislation · Last action: February 5, 2026Primary source | Privacy | Died | Alabama HB 265 did not become law. It would have created first-, second-, and third-degree offenses for intentionally collecting, retaining, testing, disclosing, selling, or transferring another person's DNA sample or genetic data without express consent in specified circumstances. |
| Alabama | Unlawful use of DNAWho Owns Your DNA?Legislation · Last action: May 6, 2025Primary source | Privacy | Died | Alabama HB 449 did not become law. It would have created first-, second-, and third-degree offenses for intentionally collecting, retaining, testing, disclosing, selling, or transferring another person's DNA sample or genetic data without express consent in specified circumstances. |
| Alabama | 2021 State Bills Alabama 2021 HB 216NHGRI archive2021 legislative sessionPrimary source | Privacy | Died | Creates the Alabama Consumer privacy Act. Allows a consumer to request that a business: (1) disclose personal information that it collects; (2) delete certain personal information; (3) disclose the sale of certain personal information to third parties; and (4) allow a consumer to opt out of the sale of personal information. Prohibits a business from retaliating against a consumer for making a request for disclosure or for opting out and from selling the personal information of a consumer under 18 years of age. Personal information is defined to include biometric information such as DNA. Died. |
| Alaska | 2021 State Bills Alaska 2021 HB 159NHGRI archive2021 legislative sessionPrimary source | Privacy | Died | Establishes the Consumer Data privacy Act. Requires businesses to notify consumers before the collection of personal information. Consumers may opt out of the sale of personal information. Businesses must maintain privacy policies available online describing consumer's privacy rights such as the designated methods in which the consumer can request access or deletion of personal information. Biometric information, including deoxyribonucleic acid, is considered personal information. Carries over to 2022 session. |
| Alaska | 2021 State Bills Alaska 2021 SB 116NHGRI archive2021 legislative sessionPrimary source | Privacy | Died | Establishes the Consumer Data privacy Act. Requires businesses to notify consumers before the collection of personal information. Consumers may opt out of the sale of personal information. Businesses must maintain privacy policies available online describing consumer's privacy rights such as the designated methods in which the consumer can request access or deletion of personal information. Biometric information, including deoxyribonucleic acid, is considered personal information. Carries over to 2022 session. |
| California | 2021 State Bills California 2021 AB 172NHGRI archive2021 legislative sessionPrimary source | Privacy, Research | Enacted | Abolishes the Office of Health Information Integrity and the Office of Patient Advocate. Establishes the Center for Data Insights and Innovation within the California Health and Human Services Agency, and transfers the duties of the Office of Health Information Integrity and the Office of Patient Advocate to the center. Requires the center to: (1) assume responsibility for administering the State Committee for the Protection of Human Subjects; (2) keep all personal information obtained by the center confidential, as specified; and (3) meet various requirements with regard to the disclosure of information, including the development of a comprehensive program regarding the disclosure of information to qualified researchers according to specified data use agreements. 10/8/21 Approved by the Governor. Effective immediately. |
| California | 2021 State Bills California 2021 AB 825NHGRI archive2021 legislative sessionPrimary source | Privacy | Enacted | Amends existing law to protect the privacy and security of computerized data, including personal information, owned or licensed by an agency. This bill adds genetic data to the scope of personal information under the law. Genetic data is defined as any data that results from the analysis of a biological sample of an individual, or from another source enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from analysis of the biological sample or other source, and any information extrapolated, derived, or inferred therefrom. 10/5/21 Approved by the Governor. Effective 1/1/2022. |
| California | 2021 State Bills California 2021 SB 172NHGRI archive2021 legislative sessionPrimary source | Privacy, Research | Pending | Abolishes the Office of Health Information Integrity and the Office of Patient Advocate. Establishes the Center for Data Insights and Innovation within the California Health and Human Services Agency, and transfer the duties of the Office of Health Information Integrity and the Office of Patient Advocate to the center. Requires the center to: (1) assume responsibility for administering the State Committee for the Protection of Human Subjects; (2) keep all personal information obtained by the center confidential, as specified; and (3) meet various requirements with regard to the disclosure of information, including the development of a comprehensive program regarding the disclosure of information to qualified researchers according to specified data use agreements. Carries over to 2022. |
| California | 2021 State Bills California 2021 SB 41NHGRI archive2021 legislative sessionPrimary source | Privacy, Research | Enacted | Creates the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to do the following: (1) provide clear and complete information regarding the company�s policies and procedures for the collection, use, maintenance, and disclosure of genetic data; and (2) obtain a consumer�s express consent for collection, use, and disclosure of the consumer�s genetic data including, at a minimum, separate and express consent for each circumstance specified. Genetic data is defined as any data, regardless of its format, that results from the analysis of a biological sample from a consumer, or from another element enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from the analysis of the biological sample, and any information extrapolated, derived, or inferred therefrom. Genetic data does not include deidentified data or data or a biological sample that is collected, used, maintained, and disclosed exclusively for scientific research conducted by an investigator with an institution that holds an assurance with the United States Department of Health and Human Services pursuant to Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal Regulations, in compliance with all applicable federal and state laws and regulations for the protection of human subjects in research. 10/6/2021 Approved by the Governor. Chaptered by Secretary of State. Chapter 596, Statutes of 2021. Effective January 1, 2022. |
| Colorado | 2021 State Bills Colorado 2021 SB 132NHGRI archive2021 legislative sessionPrimary source | Privacy | Died | Concerns a study of consumer protection regulation of digital communications platforms. Introduced version included a provision related to sensitive data such as genetic data. However, this provision was deleted from the engrossed version of the bill. Died. |
| Colorado | 2021 State Bills Colorado 2021 SB 190NHGRI archive2021 legislative sessionPrimary source | Privacy | Enacted | Creates the Colorado privacy Act. Prohibits the processing of a consumer's sensitive data without first obtaining the consumer's consent. Sensitive data includes genetic or biometric that may be processed for the purpose of uniquely identifying an individual. 7/7/2021 Governor signed. Effective July 1, 2024. |
| Connecticut | 2021 State Bills Connecticut 2021 SB 893NHGRI archive2021 legislative sessionPrimary source | Privacy | Died | Establishes a framework for controlling and processing personal data. Establishes responsibilities and privacy protection standards for data controllers and processors. Grants consumers the right to access, correct, delete and obtain a copy of personal data and to opt out of the processing of personal data for the purposes of targeted advertising. Sensitive data is defined as personal data that includes the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Died. |
| Delaware | 2021 State Bills Delaware 2021 HB 262NHGRI archive2021 legislative sessionPrimary source | Privacy | Pending | Seeks to provide consumers with critical information about how their personal information is being used by data brokers. Data brokers must register with the Consumer Protection Unit of the Department of Justice and answer questions regarding their use of personal information that would be published online to inform consumers. Data brokers are required annually to complete an electronic form designated by the Director of Consumer Protection. Data brokers must report on the form the types of consumer data, including genetic data, collected directly from consumers and from consumers� devices. Carries over to 2022. |
| Florida | 2021 State Bills Florida 2021 HB 241NHGRI archive2021 legislative sessionPrimary source | Privacy | Enacted | Creates the Parents' Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. 6/29/21 Approved by the Governor. Effective 7/1/2021. |
| Florida | 2021 State Bills Florida 2021 HB 833NHGRI archive2021 legislative sessionPrimary source | Privacy, Research | Enacted | Prohibits a person to from willfully, and without express consent: (1) collecting or retaining another person's DNA sample with the intent to perform DNA analysis; (2) submitting another person's DNA sample for analysis or conducting or procuring the conduct of another person's DNA analysis; (3) disclosing another person's DNA analysis result to a third party; and (4) selling or otherwise transferring another person's DNA sample or the results of another person's DNA analysis to third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with express consent. The bill provides exemptions for certain activities such as research subject to, and conducted in compliance with, 45 C.F.R. part 46, 21 C.F.R. parts 50 and 56, or 45 C.F.R. parts 160 and 164. 6/19/2021 Approved by the Governor. Effective 10/1/2021. |
| Florida | 2021 State Bills Florida 2021 HB 969NHGRI archive2021 legislative sessionPrimary source | Privacy | Died | Creates the Florida privacy Protection Act. Requires collectors to provide notice to consumers about data collection and selling practices. Provides consumers right to request data be disclosed, deleted, or corrected and to opt-in or opt-out of sale or sharing of such data. Provides nondiscrimination measures, methods for requesting data and opting-in or opting-out of sale or sharing of such data, private cause of action, enforcement, and jurisdiction. Personal information is defined to include biometric information such as DNA. 4/30/21 Died in returning messages. |
| Florida | 2021 State Bills Florida 2021 SB 1140NHGRI archive2021 legislative sessionPrimary source | Other Topics, Privacy | Died | This bill prohibits DNA analysis and disclosure of DNA analysis results without authorization; prohibits the collection or retention of a DNA sample of another person without authorization for specified purposes; prohibits specified DNA analysis and disclosure of DNA analysis results without authorization, etc. |
| Florida | 2021 State Bills Florida 2021 SB 1734NHGRI archive2021 legislative sessionPrimary source | Privacy | Died | Creates the Florida privacy Protection Act. Requires certain businesses that collect consumer personal information to provide certain information to the consumer. Provides that consumers have the right to direct certain businesses not to sell their personal information. Prohibits businesses from selling the personal information of consumers younger than a specified age without express authorization from the consumer or the consumer�s parent or guardian under certain circumstances. Authorizes consumers to initiate civil actions for violations. Personal information is defined to include biometric information such as DNA. 4/28/21 Read 2nd time. Substituted CS/CS/CS/HB 969 (Died in returning Messages). Laid on Table - SJ 753. |