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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.

NORTH CAROLINA

Confidentiality of Health Information

  • Medical records maintained in healthcare facilities and hospitals must be kept confidential. [West’s North Carolina General Statutes Annotated, 131E-97].
  • HMOs must keep medical information confidential. [West’s North Carolina General Statutes Annotated, 58-67-180].

Conditions Imposed on Genetic Testing/Use of Genetic information

Restricts the use of genetic information for provision of insurance. Prohibits discrimination on the basis of genetic testing or genetic information in employment. [West’s North Carolina General Statutes Annotated, 95-28.1A]

Permitted Releases of Health Information or Genetic Information for Research

All scientific research proposed to be conducted by persons other than authorized Program staff using the information from the Program, shall first be reviewed and approved by the Director of the State Center for Health and Environmental Statistics and an appropriate committee for the protection of human subjects which is approved by the United States Department of Health and Human Services pursuant to Part 46 of Title 45 of the Code of Federal Regulations. Satisfaction of the terms of the Commission’s rules for data access shall entitle the researcher to obtain information from the Program and, if part of the research protocol, to contact case subjects.

[West’s North Carolina General Statutes Annotated, Section 130A-131.17. Confidentiality of information; research]

Definition of Genetic Test/Genetic Information

“Genetic information” means information about genes, gene products, or inherited characteristics that may derive from an individual or a family member. “Genetic information” does not include the results of routine physical measurements, blood chemistries, blood counts, urine analyses, tests for abuse of drugs, and tests for the presence of human immunodeficiency virus.

[West’s North Carolina General Statutes Annotated, Section 58-3-215. Health Insurance: Definition of Genetic information]

As used in this section, the term “genetic test” means a test for determining the presence or absence of genetic characteristics in an individual or a member of the individual’s family in order to diagnose a genetic condition or characteristic or ascertain susceptibility to a genetic condition. [West’s North Carolina General Statutes Annotated, Section 95-28.1A. Discrimination against persons based on genetic testing or genetic information prohibited.]