Genome Statute and Legislation Database

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.

Health and disability insurers may not deny applicants insurance coverage because of a diagnosis of sickle cell anemia.

Health benefit plans, including the Alabama Medicaid Agency, may not require a genetic test to determine if a person has a predisposition to cancer as a condition of insurability or use the results of such a test to determine insurability or discriminate with respect to rates or benefits. The statutes set forth penalties for insurance companies or health maintenance organizations that violate the law.

This bill requires health care insurers in the individual market to comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-53. Health care insurers in the group market must comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91. Signed into law August 5, 2009.

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

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. 

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. 

This statute provides protections for the privacy of DNA samples and the results of DNA analysis. DNA samples and the results of DNA analysis are the exclusive property of the person sampled or analyzed. Samples collected and analyses conducted for the DNA registry, law enforcement purposes, paternity testing, newborn screening, and emergency medical treatment are exempt. The statute sets forth civi and criminal penalties for violations of the law.

Health care insurers offering individual or group plans must comply with the genetic information nondiscrimination requirements established under 42 USC 300gg-53, or 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91, respectively.

Health care insurers in the group market may not establish rules for eligibility or continued eligibility based on genetic information or impose preexisting condition exclusions based on genetic information in the absence of a diagnosis.

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 amends existing law that prohibits health benefit plans from terminating coverage based on a health status-related factor, including genetic information, by adding a group disability policy or a certificate of insurance for a group disability policy that is not issued in the state of Arizona to the definition of "health benefit plan." Signed by the Governor on April 28, 2008.

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.

The bill establishes the right of parents to consent in writing before any record of the minor child's blood or deoxyribonucleic acid is created, stored or shared, with some exceptions such as for newborn screening. Signed by the Governor May 10, 2010.

This bill amends state law pertaining to genetic testing. New provisions include that a person may not order a genetic test without the informed consent of the person being tested.  Signed by the Governor on 3/17/2016. Effective August 6, 2016.

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.

Requires that genetic testing information be released only as authorized by state or federal law, including the Health Insurance Portability and Accountability Act privacy standards. Permits the release of genetic testing information to a health care provider who is providing care to the person tested and the health care provider's agent or employee. Allows a legal representative of a clinical laboratory that is in possession of the medical record to receive the genetic test and information derived from the genetic test when the laboratory is obtaining legal advice. Allows a licensed pathologist to order and perform genetic testing for a patient and receive the results. Signed by the Governor on May 22, 2019.

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. 

Parents must consent in writing before any record of the minor child's blood or deoxyribonucleic acid is created, stored or shared, with some exceptions such as newborn screening.

Information derived from genetic testing my only be released to the person tested or others with written authorization from the person tested with some exceptions, including but not limited to (1) a researcher for medical research and public health purposes, only if the research is conducted pursuant to applicable federal or state laws and regulations, (2) if the identity of the individual providing the sample is not disclosed to the person collecting and conducting research; or (3) a third person if approved by a human subjects review committee or human ethics committee, with respect to persons who are subject to a state cancer registry. The law also places restrictions on disclosure or compelling disclosure, requires consent from a parent or legal guardian of a minor to conduct genetic testing other than newborn screening, and requires written informed consent for genetic testing by health care providers with some exceptions.

A health care services organization may not cancel an enrollee's evidence of coverage issued on a group basis because of criteria specified in the statutes, including such health status-related factors. Genetic information is a health status-related factor.

Genetic information is a health status-related factor that may not be used as the basis for denial of coverage or as the basis for a pre-existing condition exclusion in the absence of a diagnosis in the individual health insurance market.

Accountable health plans may not (1) deny, limit or condition coverage or benefits based on health status-related factors, including genetic information or (2) impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

Life and disability insurers (disability insurance is defined in the statutes to include health insurers) may not refuse to consider an application on the basis of a genetic condition. Information about a genetic condition may not be used for underwriting or ratemaking of life and disability insurance policies unless supported by the applicants medical condition, medical history and either claims experience or actuarial projections. In the case of disability insurance the use of information about a genetic condition for underwriting or ratemaking purposes constitutes unfair discrimination in the absence of a diagnosis.

A person may not order or require the performance of a genetic test without written informed consent. Genetic test results may not be disclosed without the express consent of the subject of the test or the person authorized to consent for that person.

Employers may not discriminate against an individual based on genetic test results, notwithstanding professionally developed ability tests that are not designed to discriminate because of race, color, religion, sex or national origin.

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

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors. 3/29/2017 Enacted.

Amends the definition of personal information under Personal Information Privacy Act. Protected personal information is defined to include biometric information such as DNA. 4/15/2019 HB 1943 is now Act 1030.

Provides for the protection of personal information maintained by businesses, including biometric information. Biometric information is defined to include DNA. 

Employers may not seek to obtain, use or require a genetic test or genetic information to distinguish between or discriminate against persons applicants or employees. Criminal and civil penalties are set forth for violations.

No individual records of subjects in genetic research studies approved by an institutional review board or conducted subject to the requirements of the federal common rule may be subpoenaed or subject to discovery in civil suits except in cases where the information in the records is the basis of the suit. These records may not be disclosed to an insurer or employer without the informed written consent of the subject. Stored tissues, including blood, that arise from surgery or other diagnostic and therapeutic steps may be disclosed for genetic or other research studies if the patients name or social security number is not attached to or included with the specimen. Identifying information may be disclosed with the informed written consent of the individual. Published results may not identify a subject unless the individual has provided specific informed consent.

Insurers except those offering life, disability income and long-term care plans may not request or require an individual or family member to obtain a genetic test for the purpose of determining eligibility, establishing premiums, limiting, renewing or terminating coverage, or another other underwriting activity or condition a policy on an individual taking a genetic test.

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors.

Preexisting condition exclusions may not be based on genetic information in the absence of a diagnosis. Insurers issuing group health plans may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information.

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 requires the health department to charge a fee to researchers and health care providers who have been approved by the department to use stored umbilical cord, pregnancy blood, or newborn blood samples for research to cover the costs of administering the program. Signed by the Governor October 11, 2007. (The bill goes into effect only if 2007 AB 34, which was enacted during the 2007 session, becomes law before January 2008.)

The bill establish fees, which the department may collect from researchers who have been approved by the department and who seek to umbilical cord blood, pregnancy blood collected by the Genetic Disease Screening Program, and stored by the Birth Defects Monitoring Program, and newborn blood collected by the Genetic Disease Screening Program. Fees may not to exceed the costs of administering the program and collection and storage of the samples. Signed by the Governor September 30, 2008.

The bill 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. Vetoed.