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ARIZONA STATE SENATE
Fifty-Fourth Legislature, First Regular Session
genetic testing information; confidentiality; exceptions
Purpose
Expands the list of entities authorized to receive genetic testing information. Permits a pathologist to order and perform genetic testing.
Background
A genetic test is an analysis of an individual's DNA, gene products or chromosomes that indicates a propensity for or susceptibility to illness, disease, impairment or other disorders, whether physical or mental or that demonstrates genetic or chromosomal damage due to environmental factors, or carrier status for a disease or disorder (A.R.S. § 20-448.02).
According to statute, genetic testing and information is confidential and considered privileged to the person tested. Genetic testing information can only be released to authorized entities including: 1) the tested person; 2) any person who is specifically authorized in writing by the tested person; 3) the tested person's health care decision maker; 4) a third person if approved by a human subjects committee or a human ethics committee, in certain circumstances; 5) an authorized agent or employee of a health care provider that performs the test, is authorized to obtain the test results for genetic counseling or treatment, provides patient care, treatment or counseling; 6) the authorized agent of a federal, state or county health department to conduct activities specifically for the birth defects registry, children's rehabilitative services, newborn screening, sickle cell diagnosis and treatment programs and chronic, environmentally provoked and infectious disease programs; 7) the legal representative of a health care provider that is in possession of the medical record; and 8) a health care provider who assumes responsibility to provide care for, or consultation to, the patient from another health care provider that had access to the patient's genetic records (A.R.S. § 12-2802).
There is no anticipated fiscal impact to the state General Fund associated with this legislation.
Provisions
1. Requires that genetic testing information be released only to the following:
a) a health care provider who is providing care to the person tested;
b) an agent or employee of the health care provider;
c) a person or entity that provides services to a health care provider or clinical laboratory if the health care provider or clinical laboratory has an agreement requiring the person or entity to protect the confidentiality of the genetic testing and information and as required by the Health Insurance Portability and Accountability Act privacy standards;
d) a statewide health information exchange;
e) a nationally recognized accreditation organization;
f) an Arizona health professional licensing board; and
g) an entity, other than a disability insurer, that is responsible for the payment of a healthcare provider's charges and that uses the information only for the payment of those charges.
2. Allows a licensed pathologist to order and perform genetic testing for a patient and receive the results.
3. Excludes consumer tests that are performed in a person's home, not ordered by a licensed health care provider and not used for diagnostic purposes from the definition of genetic testing.
4. Makes technical and conforming changes.
5. Becomes effective on the general effective date.
Prepared by Senate Research
February 11, 2019
CRS/AG/gs