Genetic privacy is a concept concerning an individual’s right to keep their personal genetic information, specifically the sequence of their deoxyribonucleic acid (DNA) private from anyone they choose. Individuals may want their personal genetic information kept private from entities such as the government, insurance companies, or family members. This is an important problem in the respective fields of medicine, law, insurance, and more as it concerns a breach of the right to privacy. DNA sequences are unique to an individual (with the exception of identical twin siblings). DNA can be used to identify any living eukaryote with high accuracy; it can also be used to accurately predict future health problems, connect biological families, and convict individuals of crimes. There is nothing that can more accurately describe or identify anyone than their DNA sequence; it is essentially a barcode. The sharing of genetic information should be left up to individual discretion; its privacy should be protected with utmost zeal.
GINA outlaws any form of discrimination with respect to health care and coverage when it comes to one's genetic information, and it outlaws discrimination in employment when it comes to one's genetic information.
Florida became the first state to enact DNA privacy laws in July 2020. House Bill 1189 prevents insurance providers from using DNA information.
California's Consumer Privacy Act of 2018 requires businesses to inform customers of the particular use of their genetic information, and must give these individuals the option to choose to opt out of this action.
Maryland and Montana were the first states to pass laws to make acquiring genetic information for the purpose of forensics investigation and law enforcement procedures tougher.
Arizona and Utah passed laws in 2021 requiring notification to customers by organizations of privacy policies and genetic data usage.
Both states passed bills requiring companies to state their privacy policies, obtain consent from individuals, provide individuals access to their own information, and prohibit the distribution of the material to other parties.
These states are hoping to enact legislation requiring 90% of the proceeds from testing companies to be brought back to the individuals who consented to give their genetic information to these organizations.