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
- Health care information is confidential and may not be disclosed by health facilities without the written consent of the individual. “Health care” means preventative, diagnostic, therapeutic, rehabilitative, maintenance or palliative care, services, treatment, procedures or counseling, including appropriate assistance with disease or symptom management and maintenance, that affects an individual’s physical, mental or behavioral condition, including individual cells or their components or genetic information, or the structure or function of the human body or any part of the human body. Health care includes prescribing, dispensing or furnishing to an individual drugs, biologicals, medical devices or health care equipment and supplies; providing hospice services to an individual; and the banking of blood, sperm, organs or any other tissue. [Maine Revised Statutes Annotated, Title 22, Section 1711-C]
- Maine prohibits the sale or marketing of medical information by a health care practitioner or facility without written or oral authorization for the disclosure. [Maine Revised Statutes Annotated, Title 22: Section 1711-C]
State Law Prohibiting Sales of Medical Information
Maryland prohibits “persons” from disclosing by sale, rental, or barter any medical record.
[Annotated Code of Maryland, 4-304]
Conditions Imposed on Genetic Testing/Use of Genetic information
All DNA records are confidential and access to records is limited to governmental criminal justice and law enforcement agencies. Nonidentifying information may be released to advance DNA analysis methods and support statistical interpretation of DNA analysis. [Maine Revised Statutes Annotated, Title 25, Section 1577]
Permitted Releases of Health Information or Genetic Information for Research
Maine’s statute requiring that health care information be kept confidential and requires informed consent for disclosures excludes information that “Protect(s) the anonymity of the individual by means of encryption or encoding of individual identifiers or information pertaining to or derived from federally sponsored, authorized or regulated research governed by 21 Code of Federal Regulations, Parts 50 and 56 and 45 Code of Federal Regulations, Part 46, to the extent that such information is used in a manner that protects the identification of individuals.” [Maine Revised Statutes Annotated, Title 22, Section 1711-C]
Definition of Genetic Test/Genetic Information
As used in this section, unless the context otherwise indicates, the following terms have the following meanings.
- “Genetic characteristic” means any inherited gene or chromosome, or alteration of a gene or chromosome that is scientifically or medically believed to predispose an individual to a disease, disorder or syndrome or to be associated with a statistically significant increased risk of development of a disease, disorder or syndrome.
- “Genetic information” means the information concerning genes, gene products, or inherited characteristics that may be obtained from an individual or family member. C. “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 deoxyribonucleic acid, or DNA, ribonucleic acid, or RNA, or mitochondrial DNA, and tests of chromosomes or proteins in order to identify a predisposing genetic characteristic.
- “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 deoxyribonucleic acid, or DNA, ribonucleic acid, or RNA, or mitochondrial DNA, and tests of chromosomes or proteins in order to identify a predisposing genetic characteristic.
[Maine Revised Statutes Annotated, Title 5 Section 19301 and Title 24A Section 2159-C (use of genetic information for insurance and employment respectively)]
Authors’ note: Maine’s health care information statute covers genetic information because “health care information” is defined broadly. Health care information means information that directly identifies the individual and relates to that individual’s health care, which includes services and treatment that involve individual cells or their components or genetic information. [Maine Revised Statute, Title 22, Section 1711-C and 1999 Maine Laws 512.