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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.

NEBRASKA

Confidentiality of Health Information

  • HMOs must maintain the confidentiality of health information. [Nebraska Revised Statutes 44-43,172]
  • Nonpublic consumer health information must not be disclosed by insurers. The Consumer Health Information Act defines “Nonpublic personal health information” as health information that identifies an individual or with respect to which there is a reasonable basis to believe that the information could be used to identify an individual. [Nebraska Revised Statutes Section 44-903(21) “Health information” is any information (except age or gender), recorded in any form, that was created by or derived from a health care provider or the consumer that relates to the past, present or future physical, mental or behavioral health or condition of an individual; the provision of health care to an individual; or payment for the provision of health care. Entities that comply with HIPAA are exempt from the requirements of the Act. [Nebraska Revised Statute Section 44903(15].

Conditions Imposed on Genetic Testing/Use of Genetic information

Physicians are required to obtain the written informed consent of the patient prior to perform a presymptomatic or predictive genetic test .The informed consent document must explain the following: (a) The nature and purpose of the presymptomatic or predictive genetic test; (b) The effectiveness and limitations of the presymptomatic or predictive genetic test; (c) The implications of taking the presymptomatic or predictive genetic test, including the medical risks and benefits; (d) The future uses of the sample taken to conduct the presymptomatic or predictive genetic test and the genetic information obtained from the presymptomatic or predictive genetic test; (e) The meaning of the presymptomatic or predictive genetic test results and the procedure for providing notice of the results to the patient; and (f) Who will have access to the sample taken to conduct the presymptomatic or predictive genetic test and the genetic information obtained from the presymptomatic or predictive genetic test, and the patient’s right to confidential treatment of the sample and the genetic information. [Nevada Revised Statutes, Physician; genetic tests; written informed consent; 71-1,104.01].

Permitted Releases of Health Information or Genetic Information for Research

Genetic information means information about a gene, gene product, or inherited characteristic derived from a genetic test; (b) Genetic test means the analysis of human DNA, RNA, and chromosomes and those proteins and metabolites used to detect heritable or somatic disease-related genotypes or karyotypes for clinical purposes. A genetic test must be generally accepted in the scientific and medical communities as being specifically determinative for the presence, absence, or mutation of a gene or chromosome in order to qualify under this definition. Genetic test does not include a routine physical examination or a routine analysis, including a chemical analysis, of body fluids unless conducted specifically to determine the presence, absence, or mutation of a gene or chromosome. Genetic test does not include a procedure performed as a component of biomedical research that is conducted pursuant to federal Common Rule under 21 C.F.R. Parts 50 and 56 and 45 C.F.R. Part 46, as such regulations existed on September 1, 2001.”

[Nebraska Revised Statutes, Requirements for Genetic Tests, Physicians, 711,104.01]

Research that is conducted pursuant to federal Common Rule under 21 C.F.R. Parts 50 and 56 and 45 C.F.R. Part 46, as such regulations existed on September 1, 2001 is not subject to the restrictions imposed on “genetic tests.” [Nebraska Revised Statutes 77-5519, Genetic test, defined]

The Consumer Health Information Act permits disclosures without the authorization of the individual for the performance of several defined activities, including “scientific, medical or public policy research.” [Nebraska Revised Statutes Section 44-903(15].

Definition of Genetic Test/Genetic Information

Genetic test means the analysis of human DNA, RNA, and chromosomes and those proteins and metabolites used to detect heritable or somatic disease-related genotypes or karyotypes for clinical purposes. A genetic test must be generally accepted in the scientific and medical communities as being specifically determinative for the presence, absence, or mutation of a gene or chromosome in order to qualify under this definition. Genetic test does not include a routine physical examination or a routine analysis, including a chemical analysis, of body fluids unless conducted specifically to determine the presence, absence, or mutation of a gene or chromosome. Genetic test does not include a procedure performed as a component of biomedical research that is conducted pursuant to federal Common Rule under 21 C.F.R. Parts 50 and 56 and 45 C.F.R. Part 46, as such regulations existed on September 1, 2001. [Nebraska Revised Statutes 775519, Genetic test, defined]

Genetic information means information about a gene, gene product, or inherited characteristic derived from a genetic test. [Nebraska Revised Statutes, Genetic test, defined 77-5518]

Genetic test means the analysis of human DNA, RNA, and chromosomes and those proteins and metabolites used to detect heritable or somatic disease-related genotypes or karyotypes for clinical purposes. A genetic test must be generally accepted in the scientific and medical communities as being specifically determinative for the presence, absence, or mutation of a gene or chromosome in order to qualify under this definition. Genetic test does not include a routine physical examination or a routine analysis, including a chemical analysis, of body fluids unless conducted specifically to determine the presence, absence, or mutation of a gene or chromosome. [Nebraska Revised Statutes 48-236 Employment and Genetic Testing]