Genetic testing has become increasingly popular in recent years, as advancements in technology have improved the accuracy and reduced the cost of testing . However, the use of genetic information raises important privacy concerns. Here are some key points regarding the legalities of genetic testing and privacy:
Privacy Laws and Regulations
The California Consumer Privacy Act of 2018 includes provisions related to genetic testing companies and privacy .
The Genetic Information Nondiscrimination Act (GINA) was passed by Congress in 2008 to restrict access to individuals’ genetic information and prohibit genetic discrimination by health insurance issuers and employers .
HIPAA (Health Insurance Portability and Accountability Act) also protects patient privacy by restricting the sharing of patients’ medical information .
Direct-to-Consumer Genetic Testing and Privacy
Direct-to-consumer genetic tests are becoming increasingly available, and it is important to understand the privacy risks associated with them .
Genetic information is highly sensitive personal information that, when combined with other data, can paint a detailed picture of an individual and potentially their family members .
Companies offering direct-to-consumer genetic testing should be open and transparent about the purposes for collecting personal information, including biological samples and test results .
Consent and Notice
When collecting personal information, including genetic information, companies should provide clear notice and obtain informed consent from individuals .
Some direct-to-consumer genetic testing companies provide detailed information about the purposes of the tests and the handling of collected information, while others may provide limited or no information at all .
State-Specific Laws
Several states have enacted laws specifically addressing genetic privacy. For example, Florida has a statute that requires express consent for genetic testing and confidentiality of the results Virginia has also enacted a law imposing requirements on direct-to-consumer genetic testing companies, such as providing notice to consumers . Illinois has the Genetic Information Privacy Act, which aims to facilitate voluntary and confidential use of genetic testing information .