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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.

DELAWARE

Confidentiality of Health Information

HMOs may not disclose health information without the patient’s express consent [Delaware Code Annotated, Title 16, 9102/9113].

Conditions Imposed on Genetic Testing/Use of Genetic information

Conditions are imposed on the collection and use of genetic information regarding carrier status, information regarding an increased likelihood of future disease or increased sensitivity to any substance, information derived from laboratory tests that identify mutations in specific genes or chromosomes, requests for genetic services or counseling, tests of gene products and direct analysis of genes or chromosomes. Informed consent must be obtained (with explicit terms set forth in the statute) in order to obtain genetic information, to retain genetic information, and to release genetic information to third parties. [Delaware Code Annotated 16-1220].

Permitted Releases of Health Information or Genetic Information for Research

  • Genetic information may be obtained only with the informed consent of the individual, except that informed consent is not required to obtain genetic information for anonymous research where the identity of the subject will not be released.
  • Genetic information may not be retained without the informed consent of the individual, except when the retention of information is for anonymous research where the identity of the subject will not be released.
  • Individual tissue samples from which genetic information has been obtained shall be destroyed promptly unless retention is authorized by the individual; or retention is for anonymous research where the identity of the subject will not be released.

[Delaware Code: 16-1221/1222]

Definition of Genetic Test/Genetic Information

“Genetic information” means information about inherited genes or chromosomes, and of alterations therof, whether obtained from an individual or family member, that is scientifically or medically believed to predispose an individual to disease, disorder or syndrome or believed to be associated with a statistically significant increased risk of development of a disease, disorder or syndrome. [Delaware Code 16-1220]

“Genetic test” means a test for determining the presence or absence of an inherited genetic characteristic in an individual, including tests of nucleic acids such as DNA, RNA, and mitochondrial DNA, chromosomes or proteins in order to identify a predisposing genetic characteristic associated with disease, disorder or syndrome. [Delaware Code 16-1220]

“Genetic information” means information about inherited genes or chromosomes, and of alterations thereof, whether obtained from an individual or family member, that is scientifically or medically believed to predispose an individual to disease, disorder or syndrome, or believed to be associated with a statistically significant increased risk of development of a disease, disorder or syndrome. This includes, but is not limited to, information regarding carrier status, information regarding an increased likelihood of future disease or increased sensitivity to any substance, information derived from laboratory tests that identify mutations in specific genes or chromosomes, requests for genetic services or counseling, tests of gene products, and direct analysis of genes or chromosomes.

[Delaware Code, Title 18–Insurance Code: 2317 Genetics Based Discrimination]