Genome Statute and Legislation Database

The bills governs the use of personal information by state institutions. The definition of personal information includes a biometric or genetic print. Signed by the Governor on April 10, 2014.

The board of the Hawaii employer-union health benefits trust fund must require every health benefits plan established or contracted to include lower deductibles and co-payments for non-smokers of tobacco and other persons engaged in low risk health behaviors that are designed, in compliance with applicable federal and state laws, to encourage preventative health care, promote wellness, and discourage medically unnecessary use of health care services; provided that the board consults with medical professionals to determine what should be included as low risk health behaviors. Genetic factors and pre-existing medical conditions may not be considered as a behavior when determining what constitutes low risk behavior. Died.

The Commissioner of Social Services must provide Medicaid coverage to the extent permissible under federal law for pharmacogenomics tests determined to be medically necessary. The commissioner may not require prior authorization for medically necessary pharmacogenomics tests for persons being treated for (1) behavioral disorders, (2) psychiatry disorders, (3) cardiovascular disorders, and (4) chronic pain. Died.

The controller of a legal entity that conducts business in the state may not process sensitive data concerning a consumer without obtaining the consumer's consent, or, in the case of the processing of personal data concerning a known child, without obtaining consent from the child's parent or lawful guardian, in accordance with the children's online privacy protection act requirements. Sensitive data is defined to include genetic or biometric data for the purpose of uniquely identifying a person. The law does not apply to various types of information and entities such as protected health information under HIPAA and identifiable private information according to federal policy for the protection of human subjects. Died.

The Department of Education must prohibit the collection of confidential student information, including genetic information. The Department may not transfer student or redacted data that is confidential except under specified circumstances.

The department of education, a school administrative unit or a state agency may not collect, store, transmit or process the certain information, including DNA, from a student without the written consent of a parent or guardian of a student or an eligible student unless otherwise required or authorized by statute or rule. Died.

The Department of Healthcare and Family Services must authorize the provision of, and payment for, a baseline mammograms for women 35-39 and mammograms at certain intervals for women over 40. Women under 40 with risk factors such as positive genetic testing should receive mammograms as medical necessary. Measure failed.

The Division of Motor Vehicles or other state agency or department charged with motor vehicle registration or operation, the issuance or renewal of driver licenses or the issuance or renewal of any identification cards, must modify applications to include an exemption for a biometric and social security number religious exemption. Biometric data is defined to include DNA and RNA. Died.

The health commissioner may collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with the federal common rule for the protection of human subjects in Code of Federal Regulations, title 45, part 46. Biological specimens is defined as tissue, fluids, excretions, or secretions that contain human DNA originating from an identifiable individual, either living or deceased.

The Health Commissioner must review and approve research proposals to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals.

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.

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.

The Insurance Information and privacy Protection Act defines health care information to include information about individual cells or their components or genetic information.

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.

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.

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.

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.

The law requires breast cancer screening with mammography annually for persons with a predisposition to breast cancer.

The law requires businesses to establish certain protections when using personal information. Personal information is defined to include an individual's genetic print.

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.

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.

The law sets forth procedures for State employment appeals of grievances and disciplinary actions related to discrimination claims, including discrimination based on genetic information.

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.

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.

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.