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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 health information and health records. [Vernon’s Annotated Missouri Statutes 354.515]

Conditions Imposed on Genetic Testing/Use of Genetic information

Employers may not use genetic information or genetic test results. [Vernon’s Annotated Missouri Statutes 375.1306]

Genetic information must be treated as a confidential medical record and may not be disclosed without the written authorization of the individual, except for the purposes of medical research. [Vernon’s Annotated Missouri Statutes 191.317]

Permitted Releases of Health Information or Genetic Information for Research

Disclosure of medical information without the subject’s consent is permitted for purposes of health research conducted in accordance with the provisions of the federal regulations (45 CFR 46 or 21 CFR 50 and 56) ; or to health research using archives or databases in which the identity of individuals is protected from disclosure by coding or encryption or by removing all identities [Vernon’s Annotated Missouri Statutes 375.1309]

All testing results and personal information obtained from any individual, or from specimens from any individual shall be held confidential and be considered a confidential medical records, except for such information that an individual, parent or guardian consents to be released; but the individual must first be fully informed of the information to be released, of the risks, benefits and purposes for such release, and of the identify of those to whom the information will be released. Statistical data complied without reference to the identity of any individual shall not be declared confidential. [Vernon’s Annotated Missouri Statutes 191.317]

Definition of Genetic Test/Genetic Information

“Genetic test,” a laboratory test of human deoxyribonucleic acid (DNA) or ribonucleic acid (RNA) used to identify the presence or absence of inherited alterations in the DNA or RNA which cause predisposition to disease or illness. The term does not include routine physical measurements and examinations, routine tests performed as a part of a physical examination, chemical, blood or urine analysis, cholesterol tests, tests for the presence of the human immunodeficiency virus, a test for drugs, or tests commonly accepted in clinical practice at the time. [Vernon’s Annotated Missouri Statutes 375.1300]