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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

  • Florida imposes rules for ownership and control of patient records [Florida Statutes Annotated 456.057].
  • The sale of medical information is prohibited [Florida Statutes Annotated, 456.057] “Absent a specific written release or authorization permitting utilization of patient information for solicitation or marketing the sale of goods or services, any use of that information for those purposes is prohibited.”

Conditions Imposed on Genetic Testing/Use of Genetic information

  • DNA analysis may be performed only with the consent of the individual being tested.
  • The results of DNA tests are the personal property of the individual.
  • The results of DNA tests may not be disclosed without permission.
  • Anyone performing DNA analysis must provide notice to the individual whose DNA is being tested.

[Florida Statutes Annotated 760.40]

Permitted Releases of Health Information or Genetic Information for Research

Florida law specifies strict duties and procedures for “records owners” but allows research uses of data with the informed consent of the individual patient or when the data are unidentified (“For statistical and scientific research, provided the information is abstracted in such a way as to protect the identity of the patient or provided written permission is received from the patient or the patient’s legal representative.”) The records owner is defined as “any health care practitioner who generates a medical record after making a physical or mental examination of, or administering treatment or dispensing legal drugs to, any person; any health care practitioner to whom records are transferred by a previous records owner.” [Florida Statutes Annotated 456.057]

Definition of Genetic Test/Genetic Information

“Genetic information” means information derived from genetic testing to determine the presence or absence of variations or mutations, including carrier status, in an individual’s genetic material or genes that are scientifically or medically believed to cause a disease, disorder, or syndrome, or are associated with a statistically increased risk of developing a disease, disorder, or syndrome, which is asymptomatic at the time of testing. Such testing does not include routine physical examinations or chemical, blood, or urine analysis, unless conducted purposefully to obtain genetic information, or questions regarding family history.

[Florida Statutes Annotated, Title XXXVII, 627.4301 Genetic information for insurance purposes]

“As used in this section, the term “DNA analysis” means the medical and biological examination and analysis of a person to identify the presence and composition of genes in that person’s body. The term includes DNA typing and genetic testing. (2)(a) Except for purposes of criminal prosecution, except for purposes of determining paternity as provided in s. 742.12(1), and except for purposes of acquiring specimens from persons convicted of certain offenses or as otherwise provided in s. 943.325, DNA analysis may be performed only with the informed consent of the person to be tested, and the results of such DNA analysis, whether held by a public or private entity, are the exclusive property of the person tested, are confidential, and may not be disclosed without the consent of the person tested. Such information held by a public entity is exempt from the provisions of s. 119.07(1) and s. 24(a), Art. I of the State Constitution.” [Florida Statutes Annotated, Title XLIV, 760.40 Genetic testing; informed consent; confidentiality]