Genome Statute and Legislation Database

Amends the statute governing the collection, storage, use and dissemination of genetic information by adding a section to specify that newborn screening activities are subject to the law. Requires the Commissioner of Health to evaluate the scientific and medical validity of a comprehensive and sustainable long-term storage and use plan for newborn screening test results. Approved by the Governor May 23, 2013.

Direct-to-consumer genetic testing companies requirement to provide disclosure notices and obtain consent.

The bill provides options to parents regarding blood samples collected for the purpose of newborn screening, including the right to authorize in writing that the blood sample and test results may be used for public health studies or research. 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 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.

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.

Direct-to-consumer genetic testing companies required to provide disclosure notices and obtain consent.

Establishes a genetic marker testing pilot program. The program is intended to refine the understanding of disease onset and progression, treatment response, and health outcomes through more precise measurement of genetic factors that contribute to health and disease. 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.

Medical data collected, stored, used, or disseminated by or filed with the commissioner in connection with a claim for workers' compensation benefits does not constitute genetic information for the purposes of �13.386 of the statutes pertaining to genetic privacy.

This bill adds third generation pedigrees to health data protections that apply to the state health department. This bill also requires government entities to obtain written informed consent to collect genetic information and human biological specimens. Consent must include the purpose for collection, the length of retention, and any dissemination outside the organization that will occur. Measure failed.

Requires group or individual policies, contracts or certificates of health insurance issued or renewed to cover comprehensive ultrasound screening of an entire breast or breasts if a woman is believed to be at increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing or other indications as determined by a woman's physician or advanced practice registered nurse. 1/30/2018 Died in committee.

Creates a small business health insurance pool. WIth regard to the pool, genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. Died.

Enacts the Consumer privacy Act. Provides certain rights to consumers such as the right to know the categories and specific pieces of personal information collected and the right to require a business to delete personal information. Personal information is defined to include biometric information such as DNA sequences. 02/05 (H) Died In Committee

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

Makes it unlawful for any employer or insurer to use 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 shall, upon conviction, be fined up to $5,000.00 or imprisoned for not more than one year, or both. Died in Committee on February 4, 2014.

Allows parents to request exemption of their children from certain activities during a school year, including the collection, tracking, housing, reporting, selling, or sharing with any party outside of the local school district, of noneducational-related information on my child or my family, including, but not limited to DNA sequences. 02/05 (S) Died In Committee.

This bill prohibits employers from using genetic testing for discriminatory purposes. Civil and criminal penalties for violations are set forth. Measure failed.

Creates the small business health insurance pool. Health benefit plans covering small employers may not use genetic information to establish a pre-existing condition exclusion in the absence of a diagnosis of a condition related to the genetic information. 2/23/2016 (H) Died In Committee.

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

Creates the parental authority act. Parental rights include the he right to be notified in advance and to refuse or to consent in writing before any record of the minor child's blood or deoxyribonucleic acid (DNA) is created, stored or shared, with some exceptions. 2/23/2016 (H) Died In Committee.

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

Enacts the Parents Matter Act. Parental rights include the right to be notified in advance and to refuse or to consent in writing before any record of the minor child's blood or deoxyribonucleic acid (DNA) is created, stored or shared, with some exceptions. 2/23/2016 (S) Died In Committee.

This bill creates the genetic nondiscrimination in health insurance act. No health benefit plan may cancel, deny or refuse to renew benefits or coverage based on genetic information. This bill also places restrictions on health benefit plan's ability to request or require disclosure of genetic information. Measure failed.

Allows parents to opt out of certain activities conducted by the public school districts, including the collection of biometric information. Biometric information is defined to include DNA. 2/23/2016 (S) Died In Committee.

This bill prohibits group health benefit plans from imposing pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Measure failed.

Creates the small business health insurance pool. Health benefit plans covering small employers may not exclude genetic information as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. 1/31/2017 Died in Committee.

Genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. Measure failed.

Allows parents or legal guardians of students enrolled in public schools to opt-out of sharing their child's personal information with the federal government and other agencies and private contractors. Personal information includes a DNA sequence. 1/31/2017 Died in Committee.

In the group health market genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genet ic information. Measure failed.

Prohibits health plans from denying coverage for a preexisting condition unless certain conditions are met. Genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. 1/30/2018 Died in Committee.

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.

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.

Creates a small business health insurance pool. Genetic information may not be excluded as a preexisting condition in the small business health insurance pool in the absence of a diagnosis of the condition related to the genetic information. Died.

Unless otherwise directed under this section, a biological specimen may be released for purposes of anonymous scientific study. At the time of newborn screening specimen collection, the parent or legal guardian of the child from whom a biological specimen was obtained may direct the department to: (1) return the specimen after all tests have been performed; (2) destroy the specimen; or (3) store a specimen but do not release is for anonymous study. Signed by the Governor July 13, 2007

Requires state education agencies to obtain parental consent to collect biometric records from parents, K-12 students or through data sharing agreements with any other entity. Biometric records are defined to include DNA sequences. Died.

Prohibits school districts from collecting biometric information on any student without the express written consent of the student�s parent or legal guardian. Biometric information is defined to include a DNA sequence and newborn screening information. Died.

Prohibits school district from collecting biometric information on any student without express written consent of the student�s parent or legal guardian. Biometric information includes a DNA sequence. Died.

This bill, as substituted by the Senate, prohibits the treatment of genetic information as a preexisting condition in the absence of a diagnosis and prevents the establishment of rules for eligibility or continued eligibility on the basis of a health status-related factor, including genetic information, in health insurance. Measure failed.

Prohibits school districts from collecting biometric information on students without the express written consent of parents or legal guardians. Biometric information is defined to include a DNA sequence. Died.

This bill authorizes designated administrators to take action if it is determined that a person has engaged, is engaging in, or has taken a substantial step toward engaging in an act of discrimination prohibited under the state genetic nondiscrimination laws that applies to employers. Measure failed.

Prohibits a health carrier offering group health_insurance_coverage in connection with a group health plan from adjusting premium or contribution amounts for the group covered under such plan on the basis of genetic information. Such health carriers may request, but shall not require, that a participant or beneficiary undergo a genetic test if certain conditions are met. Died.

A residual newborn screening specimen is retained for five years after initial submission to the department. After five years specimens are destroyed. Unless otherwise directed, a biological specimen may be released for anonymous scientific study. At the time of collection, the parent or legal guardian of the child from whom a biological specimen was obtained may direct the department to: (1) Return a biological specimen that remains after all screening tests have been performed; (2) Destroy a biological specimen in a scientifically acceptable manner after all screening tests required have been performed; or (3) Store a biological specimen but not release the biological specimen for anonymous scientific study. A biological specimen released for anonymous study may not contain information that may be used to determine the identity of the donor. The department has authority over the use, retention, and disposal of biological specimens and related information collected in connection with newborn screening tests. The use of such specimens and related information is for public health purposes and must comply with all applicable provisions of federal law. The department may charge a reasonable fee for the use of such specimens for public health research and preparing and supplying specimens for research proposals approved by the department.

This bill authorizes designated administrators to take action if it is determined that a person has engaged, is engaging in, or has taken a substantial step toward engaging in an act of discrimination prohibited under the state genetic nondiscrimination laws that applies to employers. Measure failed.

Prohibits a person or entity from disclosing, obtaining, retaining, or using any biometric data about an individual, including DNA, with whom the person or entity is engaged in trade or commerce for any purpose other than that which the individual reasonably expects. Died.

An insurer in making any underwriting decision may not (1) require or request a person or his/her blood relative to provide genetic information or take a genetic test, (2) inquire about a genetic test or what the results of any such test were unless given approval by that person, or (3) consider without the approval of such person the fact that genetic information or a genetic test was taken or refused by a person or blood relative of the person or the results of a test. A violation is an unfair trade practice. The law does not apply to any policy, contract or certificate of life insurance, reinsurance, disability income or long-term care coverage.

This bill requires a state agency or education institution to obtain written consent from parents or eligible students before collecting any certain data points, including a biometric record (defined to include DNA). Died.

An employer may not use genetic information or genetic test results of an employee or prospective employee to distinguish between, discriminate against, or restrict any right or benefit otherwise due or available to such employee or prospective employee. Exceptions are provided for the underwriting of group life, disability income and long-term care insurance, actions required by law or regulation, action taken with written permission of an employee or prospective employee, and the use of genetic information when it is directly related to job performance and assigned responsibilities.

Amends statute section pertaining to the release of residual newborn screening specimens for anonymous scientific study. Requires consent of parent or legal guardian be obtained for such release at the time of specimen collection. 2/23/2021 - House public hearing completed. Died.

This bill requires a state agency or education institution to obtain written consent from parents or eligible students before collecting any certain data points, including a biometric record (defined to include DNA). Died.