Genome Statute and Legislation Database

Prior to amendment, this bill exempt insurance pools created by an association of private, not-for-profit educational institutions that has been in existence for at least 25 years from the provisions governing genetic information nondiscrimination. This language was removed from the final version of the bill, which was signed by the Governor May 15, 2007.

Requires a parent, legal guardian, or student, if the student is 18 years of age or older, to provide informed written consent before the collection of individual student biometric data, including DNA. Establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools. Effective 7/1/2018.

Extends the sunset date of the genetic advisory committee to June 30, 2025. Signed by the Governor 3/22/2019. Pub. Ch. 43.

Pertains to medical authorization required to release protected health information in a health care liability claim. Allows the patient or patient's personal or legal representative to exclude genetic information from the authorization. 6/9/2017 Signed by the Governor.

Relating to an individual's genetic data, including the use of that data by certain genetic testing companies for commercial purposes and the individual's property right in DNA; authorizing a civil p...

Governs the use of biometric identifiers, including human biological samples used for valid scientific testing or screening, by educational entities. Signed by the Governor on 3/23/2016.

Requires the Medicaid program to reimburse for exome sequencing for undiagnosed enrollees under the age of 21. March 26, 2019 Governor Signed. Effective 60 days after adjournment on March 14, 2019.

Introduced version prohibited a lobbyist from engaging in unlawful harassment, including based on genetic information. The language pertaining to genetic information was not included in the final version signed by the Governor on 3/26/2019.

Enacts the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to:
(1) provide a consumer clear information regarding the company's collection, use, and disclosure of genetic data;
(2) provide a consumer a publicly available privacy notice; (3) obtain a consumer's consent for certain collection, use, or disclosure of the consumer's genetic data; (4) protect a consumer's genetic data; (5) allow a consumer to access and delete the consumer's genetic data; and (6) upon request, destroy a consumer's biological sample. Prohibits a direct-to-consumer genetic testing company from disclosing a consumer's genetic data to certain persons. 3/17/2021 Signed by the Governor. Effective 5/5/2021.

Prohibits a large health care facility shall not discriminate on the basis of genetic information in its provision of financial assistance or in the implementation of its financial assistance policy. Carries over to 2022.

Requires (1) the State Court Administrator for the Judicial Branch; (2)the Director of Information Technology for the Legislative Branch; and (3) the Chief Data Officer within the Agency of Digital Services and the Chief Records Officer within the Office of the Secretary of State for the Executive Branch to conduct a data privacy inventory for their respective branches of government. The inventory must address the collection and management of personally identifiable information, including genetic information. Requires a report to the legislature on or before January 15, 2021. Signed by the Governor on March 5, 2020.

Prohibits a sponsor of a registered apprenticeship program from discriminating against an apprentice or applicant for apprenticeship on the basis of various factors, including genetic information. 4/22/20 House: Enacted, Chapter 1228. Effective 7/1/20.

Establishes a framework for controlling and processing personal data in the Commonwealth. Applies to all persons that conduct business in the Commonwealth and either (i) control or process personal data of at least 100,000 consumers or (ii) derive over 50 percent of gross revenue from the sale of personal data and control or process personal data of at least 25,000 consumers. Outlines responsibilities and privacy protection standards for data controllers and processors. Grants consumer rights to access, correct, delete, obtain a copy of personal data, and to opt out of the processing of personal data for the purposes of targeted advertising. Sensitive data, a form of personal data, is defined to include the processing of genetic or biometric data. The bill has a delayed effective date of January 1, 2023. Carried over to 2021 Special Session 1. Governor approved 3/2/21.

Establishes requirements for direct-to-consumer genetic testing companies, defined in the bill, including requirements related to information to be provided to consumers, express consent requirements...

Establishes a framework for controlling and processing personal data in the Commonwealth. Applies to all persons that conduct business in the Commonwealth and either (i) control or process personal data of at least 100,000 consumers or (ii) derive over 50 percent of gross revenue from the sale of personal data and control or process personal data of at least 25,000 consumers. Outlines responsibilities and privacy protection standards for data controllers and processors. Grants consumer rights to access, correct, delete, obtain a copy of personal data, and to opt out of the processing of personal data for the purposes of targeted advertising. Sensitive data, a form of personal data, is defined to include the processing of genetic or biometric data. The bill has a delayed effective date of January 1, 2023. Carried over to 2021 Special Session 1. Governor approved 3/2/21.

Modifies the state privacy law pertaining to biometric information by adding DNA to the definition of biometric identifiers. Provides an exception for law enforcement agencies. 6/27/2017 Signed by the Governor. Effective 7/23/2017.

Making state law consistent with selected federal consumer protections in the patient protection and affordable care act. Prohibits a health carrier or health plan from establishing rules for eligibility based on health-status related factors such as genetic information. April 17, 2019 Signed by the Governor. Effective immediately.

Prohibits the West Virginia Department of Education from transferring confidential student information, including genetic information, to any federal, state or local agency or other person or entity with some specified exceptions. Signed by the Governor 3/25/2016. Effective 90 days from passage.

This bill amends statute section 631.89 (2) (bm) related to requesting or requiring genetic information from health care providers by amending the definition of covered providers to include providers as defined in section 146.81 (a) to (p). Report approved by the Governor with partial veto June 26, 2009 (section pertaining to genetic testing unaffected by partial veto)

This bill would eliminate the compensatory and punitives damages for acts of employment discrmination or unfair honesty or genetic testing. Signed by the Governor April 6, 2012.

Prohibits the collection, retention and disclosure of genetic information without informed consent. Establishes requirements for the retention and destruction of genetic information. 3/16/2018 Governor Signed HEA No. 0060.

This bill creates the Genetic Information privacy Act. The bill establishes procedures for obtaining, disclosing and storing genetic information as well as penalties for unlawful disclosure. Measure failed.

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.

Prohibits state agencies, local education agencies, or local education institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits certain information about the student or the family of the student, including biometric records. Biometric records are defined to include a DNA sequence. Died.

Prohibits state agencies, local education agencies, or local education institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits certain information about the student or the family of the student, including biometric records. Biometric records are defined to include a DNA sequence. Died.

Prohibits health benefit plans, life insurers, and long term care insurers from (1) using an individual's genetic information to deny him or her insurance or to establish differentials in premium rates, or (2) requiring or soliciting genetic information, using genetic test results, or considering an individual's decisions or actions relating to genetic testing in any manner for insurance purposes. 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.

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.

Excludes DNA samples collected in the course of the person's business of determining genetic genealogy from the state genetic privacy law. 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.

Excludes DNA samples collected in the course of the person's business of determining genetic genealogy from the state genetic privacy law. Died.

This bill requires hospital or medical service corporations, health care service organizations, and individual, group and blanket disability insurers who provide health care coverage to pregnant women to cover the cost of genetic testing for thrombophilia if it is ordered by a physician. Measure failed.

This bill prohibits health care service organizations from imposing pre-existing condition limitations or exclusions. Genetic conditions in the absence of a diagnosis related to the condition are not considered pre-existing conditions and may not result in a pre-existing condition limitation or exclusion. Measure failed.

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

Prohibits schools and school service providers from collecting or possessing biometric information of elementary or secondary school students unless the school service provider: (1) develops a written policy for the collection, retention, disclosure and destruction of biometric information; and (2) obtains a written release to collect biometric information. Sets forth protections for biometric information, if collected. Biometric information is defined as information derived from any biometric identifier used to identify an individual. Died.

Allows the release of genetic testing and information derived from genetic testing to the following, if the necessary requirements are met: an individual or entity that provides services to a health care provider or clinical laboratory, a statewide health information exchange, the health insurance carrier of the person tested, a nationally recognized accreditation organization, a health professional licensing board in the state, and an entity that is responsible for the payment of a health care provider charges. Died.

Prohibits placing an inmate in isolated confinement based on certain factors, including genetic information. Died.

Establishes requirements for controllers upon the receipt of a verified request from consumers to exercise their rights with respect to the processing of personal data, including genetic data for the purpose of uniquely identifying a person. Died.

Amends the state genetic privacy law. Declares genetic testing and the information derived from it, whether in the possession of a public or private entity, to be the exclusive private property of the person tested. Died.

Prohibits placing an inmate in isolated confinement based on certain factors, including genetic information. Died.

Enacts the Parents' Bill of Rights. A parent must consent in writing before a biometric scan of a minor child or a record of a minor child's blood or DNA is created, shared, or stored. April 2, 2015 Recommended for study in the Interim by Joint Interim Committee on JUDICIARY COMMITTEE- HOUSE

This bill amends existing law pertaining to pregnancy blood samples. Existing law provides for the use of samples for approved research projects and establishes confidentiality and privacy protections with regard to samples and related personal information. This bill renames the term "pregnancy" blood samples by referring to them as "newborn" blood samples. Measure failed.

This bill prohibits the denial of a workers' compensation claim solely because the motivation behind what caused the employee's injury or injury resulting in death was related to an immutable characteristic of the employee. The bill also states that physicians assigning apportionment to the causes of permanent disability by finding what approximate percentage of the disability is a direct result of the employment-related injury versus other factors may not consider genetic predisposition a cause or other factor of disability. Measure failed.

This bill states that all biological data derived from post-CLIA bioinformatics services shall be considered to contain genetic characteristics, as defined in section 1374.7 of the Health and Safety Code and section 10146 of the Insurance Code and is subject to the prohibitions in those sections of the statutes. Measure failed.

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.

This bill states that it is the intent of the Legislature to enact legislation to protect individuals from the unauthorized use of their genetic information, ensure that genetic information is personal information that is not collected, stored, or disclosed without the individual's authorization, provide protections for the collection, storage, and authorized use of genetic information, and promote the use of genetic information for legitimate reasons, including, but not limited to, health care, research, advancement of medicine, and educational purposes, as the field of genomics advances. Died.

Requires every health care service plan contract, except a specialized health care service plan contract to provide coverage for genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) under certain circumstances. Died.

Requires a health care service plan contract or a health insurance policy that is issued, amended, or renewed on or after January 1, 2015, to provide coverage for genetic testing for Lynch syndrome. Died.

States that a newborn sample may not be used for medical research if a parent or guardian of the newborn child objects to the testing program. The bill would require the department to provide information about the testing program, and to obtain a form signed by the parent or guardian acknowledging receiving information regarding the storage, retention, and use of the newborn child�s blood sample for medical research. Died.

Prohibits a health care service plan contract or a health insurance policy that covers prescription drug benefits from denying or otherwise limiting coverage of a genetically targeted drug for the treatment of Duchenne muscular dystrophy under specified circumstances. Died.