Genome Statute and Legislation Database

This bill establishes a personal property right to DNA samples. A person may not, without the informed, written consent of the individual or the individual's legal guardian or authorized representative: (1) collect a DNA sample from an individual; (2) perform a genetic test on an individual's DNA sample; or (3) retain an individual's DNA sample, with certain exceptions. Died.

Insurers that provide reimbursement or indemnity for laboratory or X-ray services must cover a comprehensive ultrasound screening of an entire breast or breasts if a woman is believed to be at increased risk for cancer due to positive genetic testing or other indications as determined by a woman's physician or advanced practice nurse. Died.

Prohibits state agencies, district boards of education, or pre K-12 educational institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits information about the student or the student's family concerning biometric records, which is defined to include DNA sequences. Died.

Requires the Department of Education to promulgate rules and regulations relating to the privacy and protection of student data, including DNA or other genetic material. Senate Substitute Version passed in House and Senate -- DNA or other genetic information is replaced by biometric information. The term biometric information is not defined. Substituted bill was signed by the Governor.

Establishes consumer rights to copies of information held by persons who control and process data. Provides for the correction of inaccurate data. Provides for restrictions on the use of personal data. Defines health care information to include a patient's deoxyribonucleic acid. Died.

Authorizes a person to advertise for, solicit business in the State for, offer, or perform direct to consumer genetic testing, if certain conditions are met. Died.

This bill allows a health insurer to request a genetic test as additional information for prior authorization. (See version passed by the Senate). Measure failed.

Protects the privacy of student data, which encompasses biometric records. Biometric records is defined to include DNA. Died.

Creates the State Anti-Harassment and Workplace Discrimination Act. Declares that it is an unlawful employment practice and unlawful discrimination, for any person, whether an employee or applicant for employment, or intern or volunteer, in any State agency or Gubernatorial Transition Office, or person doing business with the State to discriminate against or harass an employee or applicant for employment, or intern or volunteer, based upon certain protected categories, genetic information. Died.

Prohibits discrimination based on the results of a genetic test or the provision of genetic information. Insurers may not require and applicant to undergo a genetic test or answer questions about genetic testing. Died.

Establishes a rare disease medication reinsurance fund. Creates and establishes funding for a rare disease medication advisory council. Based on information from the Secretary of Health and Human Services, the council must recommend the drugs to be covered, an assessment rate, and a funding distribution method. The council must recommend for inclusion only those medications that are high cost prescription drugs, gene therapies or cell therapies designated as orphan drugs by the federal drug administration. 2/23/2021 Committee recommended measure be held for further study. Died.

Substitute bill version: Requires the drug utilization review board to consider the safety, efficacy, and cost-effectiveness of drugs and gene therapies in its recommendations to the director of the authority regarding coverage for medical assistance programs. 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.

Modernizes "personal information" for the purposes of security breach of personal information law. Personal information is defined to include a deoxyribonucleic acid profile. Died.

Prohibiting carriers that offer life insurance, long-term care insurance, and disability insurance policies or contracts from taking certain action regarding coverage based on whether an applicant or...

Requires insurance coverage for magnetic resonance imaging for certain persons for the detection of breast cancer, including women who have tested positive for Breast Cancer Gene 1 or Breast Cancer Gene 2 mutations or one or more first degree relatives test positive for Breast Cancer Gene 1 or Breast Cancer Gene 2 mutations. 3/28/2016 Accompanied a study order, see H4111.

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.

Establishes and individual's property right to his or her genetic information and DNA sample, except as expressly otherwise provided in statute. Requires consent to acquire, retain, or disclose a person's genetic information or DNA sample. 5/2/2018 Refer to Interim Study, MA, VV.

This bill prohibits any group or blanket health insurance policy from excluding coverage for any group member based on a predisposing genetic characteristic, and prohibits any hospital service corporation, health service corporation or medical expense indemnity corporation contract from excluding coverage for any group member based on predisposing genetic characteristics. Measure failed.

Creates the Equal Employment and Equal Access to Public Accommodations Act. Declares that it is the public policy of the State to protect and safeguard the right and opportunity to all individuals to seek, obtain and hold employment without discrimination or abridgment and to enjoy fully and equally the goods, services, facilities, privileges, advantages, and accommodations of places of public accommodations free of discrimination because of race, sex, national origin, citizenship, religion, age, veteran status, genetic information, pregnancy, handicap, or disability. Declares that it is the policy of the State Board of Community Colleges, local boards of trustees of the State of North Carolina, and the Board of Governors of the University of North Carolina not to discriminate among students. Died.

Relates to a prohibition on the use of genetic information gathered from direct-to-consumer genetic tests by a long-term care benefit plan issuer or a life insurance company. 5/17/2021 Received from the House. Died.

Authorizes the circuit court to order a person who engages in discrimination in employment, unfair honesty testing, or unfair genetic testing to pay compensatory and punitive damage. 4/13/2016 Failed to pass pursuant to Senate Joint Resolution 1.

Amends statute pertaining to laboratory testing without a healthcare provider's order. Defines laboratory testing to include pharmacogenetic testing. Died.

Creates the Healthy Florida program to be administered by the Healthy Florida Board. Every resident of Florida is eligible and entitled to enroll under the Healthy Florida program. The program may not discriminate based on genetic information. 3/10/2018 Died in Health Innovation Subcommittee.

This bill modifies a provision related to personal information in the event of a security breach of computerized data. The definition of personal information is amended to include a deoxyribonucleic acid profile. Died.

Amends the state law pertaining to direct and indirect advertisement of or solicitation of business for medical laboratory tests. Died.

This bill creates the Genetic Information privacy Act. The bill prohibits any person from obtaining, analyzing, or disclosing genetic information without the written authorization of the individual to whom the information pertains and requires a separate written authorization for each separate disclosure of an individual's genetic information, with some exceptions such as for law enforcement. The bill permits disaggregated and anonymized data to be used in the manner specified that was collected before the bill's enactment without the authorization described above. The bill also permits the use of disaggregated and anonymized data, as specified, if written authorization is obtained and the data is used for a purpose authorized by the individual to whom the information pertains. Measure failed.

Specifies criteria that must be met before a life insurer, long-term care insurer, or disability income insurer may use genetic information for underwriting purposes. Prohibits a life, long-term care, or disability income insurer from canceling coverage based solely on genetic information; requiring an applicant to take a genetic test as a condition of insurability; or obtaining, requesting, or otherwise requiring the complete genome sequence of an applicant�s DNA. Requires written consent for companies providing direct-to-consumer commercial genetic testing to share information about a consumer with a life insurer or health insurer. HB 1189 Substituted. Died.

Amends language pertaining to pre-existing condition exclusions in group health insurance. Prohibits group health benefit plan coverage from adjusting premium or contribution amounts for a group covered under the plan on the basis of genetic information. Died.

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection. Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information. Requires a business to comply with a request for information within 45 days after receiving a request. Died.

This bill excludes the health department's collection, use, storage and dissemination of genetic information and blood specimens for testing infants for heritable and congenital disorders from the law governing genetic information collected by a government entity. The bill also requires that parents are provided information about how specimens may be used and allows parents to opt out of public health studies or research. Measure failed.

This bill amends the health insurance statutes and prohibits a group health plan or a health insurance issuer offering group health_insurance_coverage from imposing a preexisting condition exclusion on an individual under 19 years of age because of a preexisting condition. Genetic information may not be treated as a pre-existing condition under existing law. Measure failed.

Creates the Workplace Harassment Prevention and Education Section of the Human Rights Bureau. The section is responsible for enforcing unlawful workplace harassment policies, including those that pertain to harassment based on genetic information. Died.

Establishes unlawful discriminatory practices relating to models, including discrimination based on predisposing genetic characteristics. Died.

Following discovery or notification of a breach of system security by an information holder, the information holder must disclose the breach of system security to any resident of the state whose personal information was, or is reasonably believed to have been, acquired by an unauthorized person. Personal information includes a DNA profile. Died.

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

Prohibits a consumer genetic-testing company from sharing any genetic data or other personally identifiable information about a consumer with any health or life insurance company. Died.

This bill deletes provisions in the statutes related to pre-existing conditions and the treatment on genetic information as such a condition. Measure failed.

Sets forth requirements for governmental units, including an executive, legislative or judicial agency, a department, a board, a commission, an authority, a public institution of higher education, or a unit or instrument of the state that collects or discloses personal information. Defines personal information to include an individual's genetic print. Died.

Protects biometric information under the security breach law. Biometric information includes genetic information. Died.

Prohibits any employer or insurer from using the results of DNA testing against a patient or against the patient's consanguineous family members for any discriminatory purpose. Any employer who violates this section may, upon conviction, be fined up to Five Thousand Dollars ($5,000.00) or imprisoned for not more than one (1) year, or both. Died.

Makes confidential any part of a 9-1-1 audio recording or transcript that discloses a person's health status, medical conditions, health care services or treatments, medical history, genetic information, or current health insurance plan information by excluding it from the definition of a government record. Died.

Prohibits the release of personally identifiable student information, including DNA sequence, where parental consent is not provided. Died.

Requires the public employees retirement board to provide coverage for the expenses of the diagnosis of infertility, fertility treatment, and standard fertility preservation services if recommended and medically necessary. Fertility treatment includes genetic testing. Died.

Requires health insurance and Medicaid coverage for chromosomal microarray analysis. Died.

Establishes requirements for businesses related to personal information such as biometric information collected about consumers. Biometric information is defined to include DNA. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Prohibits local or state administrative, legislative or regulatory body or instrumentality to from engaging in a discriminatory land use practice, including practices based on genetic information. 2/13/2020 In Senate. Accompanied a study order, see S2528. Died.

Allows parents to opt out of the collection, tracking, housing, reporting, selling, or sharing with any party outside of the local school district, of noneducational-related information on a child or his or her family, including a DNA sequence. 1/30/2018 Died in Committee.

Expands the state law on discrimination by prohibiting any entity that operates a health program or activity from: 1. Excluding participation in, deny the benefits of, or otherwise discriminate under any health program or activity on the basis of an individual�s genetic information or 2. Aiding or perpetuating discrimination against any person by providing significant assistance to any entity or person that discriminates on the basis of genetic information. Died.

Establishes a genetics advisory council. Topics to be examined by the council include (1) creating an environment in which there is equitable access to the benefits of genetic tests to all citizens regardless of race, ethnicity or economic status; and (2) the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.