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U.S. National Institutes of Health
Last Updated: 03/05/10

Appendix A

Summary of State Laws

This summary of state laws does not include full citations for statutes that prohibit discrimination in employment or insurance on the basis of genetic testing or genetic information. There are other comprehensive collections of state laws addressing genetic nondiscrimination in employment and insurance. Therefore, there are complete references only where the statute is relevant for the conduct of research using tissue specimens.


Confidentiality of Health Information

  • HMOs must maintain the confidentiality of patient medical records. [West’s Utah Code Annotated 31A-8-405]
  • The Utah Health Data Authority Act authorizes the collection of health data. Health Data collected pursuant to the Act must be kept confidential. [West’s Utah Code Annotated 26-33]

Conditions Imposed on Genetic Testing/Use of Genetic information

  • The Genetic Testing Privacy Act restricts the ability of insurers and employers to require genetic tests and obtain genetic information. [West’s Utah Code Annotated 26-45-103/104]
  • Utah imposes condition on clinical genetic testing.

Permitted Releases of Health Information or Genetic Information for Research

The Health Data Authority Act permits disclosures of identifiable health data when the individual has consented to the disclosure; or if the disclosure is to any organization that has an institutional review board, for a specified period, solely for bona fide research and statistical purposes, determined in accordance with department rules, and the department determines that the data is required for the research and statistical purposes proposed and the requesting individual or organization enters into a written agreement satisfactory to the department to protect the data in accordance with this chapter or other applicable law and not permit further disclosure without prior approval of the department. Any health data disclosed shall be identified by control number only. [West’s Utah Code Annotated 26-33a-109]

Definition of Genetic Test/Genetic Information

“DNA” means deoxyribonucleic acid, ribonucleic acid, and chromosomes, which may be analyzed to detect heritable diseases or conditions, including the identification of carriers, predicting risk of disease, or establishing a clinical diagnosis.

“DNA sample” means any human biological specimen from which DNA can be extracted, or DNA extracted from such specimen.

“Genetic analysis” or “genetic test” means the testing or analysis of an identifiable individual’s DNA that results in information that is derived from the presence, absence, alteration, or mutation of an inherited gene or genes, or the presence or absence of a specific DNA marker or markers.

“Genetic analysis” or “genetic test” does not mean: (i) a routine physical examination; (ii) a routine chemical, blood, or urine analysis; (iii) a test to identify the presence of drugs or HIV infection; or (iv) a test performed due to the presence of signs, symptoms, or other manifestations of a disease, illness, impairment, or other disorder.

[West’s Utah Code Annotated 26-45-102]