Genome Statute and Legislation Database
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.
State | Primary Link | Topic(s) | Bill Status | Summary Sort ascending |
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Oklahoma | State StatuteOklahoma: OS 36-3614.4 | Research | Statute | The statutes related to research apply to genetic research studies approved by an institutional review board as defined in 21 CFR, � 50 or conducted subject to the requirements of the federal common rule at 21 CFR, � 50 and � 56, and 45 CFR, � 46. research records are confidential and may not be disclosed to employers or health insurers without informed consent. The provision does not apply to an insurer or to an individual dealing with an insurer in the course of underwriting, conducting or administering life, disability income or long-term care insurance. Stored tissues, including blood, that arise from surgery, other diagnostic or therapeutic steps, or autopsy may be disclosed for genetic or other research studies with informed consent. Results of genetic research studies may be published if no individual subject is identified. |
Louisiana | State StatuteLouisiana: LRS 22:1023, 40:2210, and 22: 1097 | Health Insurance Nondiscrimination, Privacy, Research | Statute | The statutes prohibit discrimination based on genetic information of an individual or family member or the request or receipt of genetic services by a hospital, health, or medical expense insurance policy, hospital or medical service contract, employee welfare benefit plan, health and accident insurance policy, preferred provide organization or any other insurance contract of this type. Other restrictions also are placed on these entities with respect to genetic information and testing. An insurer offering individual or group health_insurance_coverage may request a genetic test if the request is made in compliance with the Common Rule and other specified criteria are met. Exceptions under the law include anonymous research where the identity of the subjects will not be released. An insured or enrollees genetic information is the property of the individual to whom it pertains and may not be retained without authorization with some exceptions. Civil penalties for violations are set forth. |
New Mexico | State StatuteNew Mexico: NMSA 24-21-1 et seq. | Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research | Statute | The statutes contain provisions on the acquisition, collection, retention, transmission or use of genetic information. Consent requirements provide an exemption (1) if DNA, genetic information or results of genetic analysis are not identified with the person or person's family members or (2) for the purpose of medical or scientific research and education (including retention of gene products, genetic information or genetic analysis if the identity of the person or person's family members is not disclosed.) Discrimination by an insurer against a person or his/her family member based on genetic analysis, genetic information or genetic propensity is prohibited. Life, disability income or long-term care insurance are exempt if use is based on sound actuarial principles or related to actual or reasonably anticipated experience. Upon request a persons genetic information or samples must be promptly destroyed with some exceptions, including if retention is authorized under a research protocol approved by an institution review board pursuant to federal law. It is unlawful for a person to use genetic information in employment or recruiting. A person whose rights under the provisions of the Genetic Information privacy Act have been violated may bring a civil action for damages or other relief. |
Michigan | State StatuteMichigan: MCL 333.5431 | Use of Residual Newborn Screening Specimens | Statute | The statute requires the health department to develop a schedule for the retention and disposal of blood specimens. The schedule must allow for the blood specimens to be used for medical research during the established retention period, as long as the medical research is conducted in a manner that preserves the confidentiality of the test subjects and is consistent to protect human subjects from research risks under subpart A of part 46 of subchapter A of title 45 of the code of federal regulations. |
Connecticut | State StatuteConnecticut CGA 38a 503 et seq. | Health Insurance Coverage | Statute | The statute provides coverage of specified services for women who meet the age requirements set forth in the statute. If a woman is believed to be at increased risk for breast cancer due to 1) family history or prior personal history of breast cancer or 2) positive genetic testing or other indications as determined by a woman's physician advanced practice registered nurse, individual and group health insurers must provide a mammogram, which may be provided by breast tomosynthesis at the option of the woman covered under the policy, and comprehensive ultrasound screening of an entire breast or breasts. Ultrasound screening is provided only if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology. |
Indiana | State StatuteIndiana: IC 16-41-17-10 | Use of Residual Newborn Screening Specimens | Statute | The state health department must develop a system for using, for epidemiological survey and research purposes, any waste blood specimen left over after newborn screening. Waste blood specimens used for the purpose of epidemiological survey may not include the name or other identifying characteristics that would identify the individual submitting the specimen. |
Kansas | 2014 State Bills Kansas 2014 HB 2621 | Privacy | Died | The state board, the department of education, a unified school district or local education agency may not provide any personally identifiable information of any student or teacher, including a DNA sequence, to any federal agency, any Kansas state or local agency, state or local agency outside the state of Kansas, or any other organization or entity unless under specified circumstances. Died. |
Massachusetts | 2017 State Bills Massachusetts 2017 H.3575 | Health Insurance Coverage | Died | The public employee retirement commission, individual and group accident and sickness insurers, individual or group hospital service plans, individual or group medical service agreements, and individual or group health maintenance contracts must cover colorectal cancer screening as determined medically necessary by a physician. Coverage requirements include KRAS, BRAF, and PIK3CA arrays. 7/18/2018 Accompanied a study order, see H4778. |
Indiana | 2019 State Bills Indiana 2019 HB 1631 | Health Insurance Nondiscrimination | Enacted | The provision pertaining to the use of genetic information in short term insurance plans was removed from the final version of this bill. 5/6/2019 Signed by the Governor. |
Maryland | 2019 State Bills Maryland 2019 HB 697 | Health Insurance Coverage | Enacted | The provision in the original version of the bill pertaining to the use of genetic information by carriers was amended. The enacted legislation establishes a workgroup on maintaining the protections established by the Affordable Care Act. May 13, 2019 Approved by the Governor - Chapter 418. Effective June 1, 2019. |
Maryland | 2019 State Bills Maryland 2019 SB 868 | Health Insurance Nondiscrimination | Enacted | The provision in the original version of the bill pertaining to the use of genetic information by carriers was amended. The enacted legislation establishes a workgroup on maintaining the protections established by the Affordable Care Act. May 13, 2019 Approved by the Governor - Chapter 417. Effective October 1, 2019. |
Minnesota | 2014 State Bills Minnesota 2014 HF 2402 | Use of Residual Newborn Screening Specimens | Died | The original version of this bill amended the newborn screening law pertaining to storage of blood samples. All language was subsequently deleted pertaining to the newborn screening program. |
Oklahoma | 2015 State Bills Oklahoma 2015 HB 1742 | Other Topics | Died | The Office of Management and Enterprise Services must contract with a vendor to conduct a pilot project to determine incentives to both health care providers and patients for each care encounter in which the provider and patient incorporate genetic testing for ability to metabolize prescription drugs, drug testing of persons prescribed narcotics and other proven medical interventions made available and recorded through the program in the rendering and utilization of health care. Died. |
North Carolina | State StatuteNorth Carolina: NCGA 126-34.01 et seq. | Employment Nondiscrimination | Statute | The law sets forth procedures for State employment appeals of grievances and disciplinary actions related to discrimination claims, including discrimination based on genetic information. |
New York | State StatuteNew York: NY Public Health Code 2440 et seq. | Research | Statute | The law safeguards the rights and welfare of individual human subjects in the conduct of human research projects and provides protections against the possible conduct of medical or psychological research without voluntary informed consent. |
Minnesota | State StatuteMinnesota: MS 62V.06 | Health Insurance Nondiscrimination, Privacy | Statute | The law requires the Minnesota Insurance Marketplace to provide any data subject asked to supply private data with a notice of rights related to the handling of genetic information. The Minnesota Insurance Marketplace is a state health benefit exchange as described in section 1311 of the federal Patient Protection and Affordable Care Act (Public Law 111-148), and further defined through amendments to the act and regulations issued under the act. |
Maryland | State StatuteMaryland: Md. Commercial Code 14-3501 et seq. | Privacy | Statute | The law requires businesses to establish certain protections when using personal information. Personal information is defined to include an individual's genetic print. |
Colorado | State StatuteColorado: CRS 10-16-102 et seq. | Health Insurance Coverage | Statute | The law requires breast cancer screening with mammography annually for persons with a predisposition to breast cancer. |
Michigan | State StatuteMichigan: MCL 500.2212c | Health Insurance Nondiscrimination, Privacy | Statute | The law requires a workgroup to develop a standard prior written authorization methodology for prescribers. If the workgroup develops a paper form, it must allow an insurer to request and require additional information beyond the form. Additional information may include patient clinical information regarding genetic tests. |
Wyoming | State StatuteWyoming WSA 35-31-101 et seq. | Privacy | Statute | The law prohibits the collection, retention and disclosure of genetic information without informed consent with some exceptions such as for law enforcement purposes, newborn screening and anonymous research. An individual may inspect, correct and obtain retained genetic information. A person conducting genetic analysis must destroy an individual's genetic information upon request. Genetic information about an individual obtained for purposes exempt from consent requirements may only be used for the purposes obtained and must be destroyed or returned to the individual upon completion of use or in accordance with law. |
Maryland | State StatuteMaryland: Md. Health Code 13-2001 et seq. | Research | Statute | The law prohibits research using a human subject unless the person conducts the research in accordance with the federal regulations on the protection of human subjects. |
New Hampshire | 2017 State Bills New Hampshire 2017 HB 523 | Privacy | Enacted | The introduced version of the bill sought to protect confidential and sensitive information such as genetic testing information. The bill has been amended to establish a committee to study the use and regulation of biometric information. Signed by the Governor on 5/15/2018. Effective 5/15/ 2018. |
Maine | State StatuteMaine: MRS 24A 2204 | Privacy | Statute | The Insurance Information and privacy Protection Act defines health care information to include information about individual cells or their components or genetic information. |
New Hampshire | 2019 State Bills New Hampshire 2019 SB 262 | Research | Died | The informational content, including DNA/RNA and genetic sequences, contained in or on abandoned personal material is the property of the individual to whom it pertains regardless of its abandonment. No government or person may acquire, collect, retain or use of such informational content, with some exceptions such as for use by a law enforcement agency. Died on the table. |
Nebraska | State StatuteNebraska: NRS 71-519 | Use of Residual Newborn Screening Specimens | Statute | The health department must adopt and promulgate rules and regulations relating to the use_of_residual_newborn_screening_specimens and related information. Use may only be made for public health purposes and must comply with all applicable provisions of federal law. The department may charge a reasonable fee for evaluating proposals relating to the use of such specimens for public health research and for preparing and supplying specimens for research proposals approved by the department. The health department also must develop a pamphlet which explains that residual newborn blood specimens may be used for approved public health research. |
Last updated: September 14, 2023