BackgroundThe Department of Health and Human Services (HHS) updated the provisions of the “Standards for Privacy of Individually Identified Health Information (Privacy Rule) under the Health Insurance Portability and Accountability Act (HIPAA). This act established guidelines regarding the privacy and confidentiality of genetic information known as the Genetic Information Nondiscrimination Act of 2008 (GINA). Under GINA, group health plans, health plan insurers, or health plan clearinghouses cannot base eligibility, benefits, or premiums on genetic information. Plans and insurers are prohibited from requesting or requiring an individual or group of individuals to undergo genetic services or genetic tests. GINA also prohibits the collecting of genetic information (including family medical history) in connection with the enrollment or underwriting process.
Department ResponsibilityThe Maryland Department of Budget and Management (Department) will respect the privacy of members under the State Employee Retiree Health and Welfare Benefits Program in relation to genetic information and will only use genetic information as established under this law.The Department will regularly review is policies, procedures, correspondences, and communications to ensure the standards established under the Genetic Information Nondiscrimination Act (GINA) are being followed.
Key DefinitionsGenetic Information refers to information about an individual or family member’s genetic tests, themanifestation of a disease, disorder, or pathological condition in family members of the individual (i.e. family medical history), any request for or receipt of genetic services, the participation in clinical research that includes genetic services for the individual or his/her family members, the genetic information for the fetus of a pregnant woman, the use genetic testing for assisted reproductive technology, or the genetic information about the embryo. Genetic information does not include information related to an individual’s sex or age.
Genetic Services refer to genetic tests, genetic counseling, or genetic education.
Genetic Testing includes the analysis of human DNA, RNA, chromosomes, proteins, or metabolites, if the testing detects genotypes, mutations, or chromosomal changes. It, however, does not include the analysis of proteins or metabolites that are directly related to a manifested disease, disorder, or pathological condition. HIV test, blood count test, cholesterol test, liver function test, or the testing for the presence of alcohol or drugs are not considered genetic tests.
Manifestation means that an individual has been or could be reasonably diagnosed with a disease, disorder, or pathological condition by a health care professional with the appropriate training and expertise in the involved field of medicine.
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