Most states in the US have already taken some steps to help protect genetic information and individual’s right to privacy. Protecting genetic data requires a little more attention than other types of health related information. Genetic information is much more sensitive, personal and familial in nature so it requires more specific legal protections. Some state that it’s just a form of health information and therefore doesn’t need to be distinguished from basic health data. But most regions agree that it is much more sensitive and a breach affects many more people than other health care information.
Restrictions on Access to Genetic Data
The states have privacy laws which are applicable to genetic privacy and restricts certain parties like employers or insurers from obtaining genetic information without the individual’s consent. Most of the states require that an informed consent has to be obtained prior to requiring a genetic test or before obtaining genetic information about an individual. 27 states require consent before genetic information can be disclosed. A handful of states treat genetic information as an individual’s private property. And one state, Alaska, extends personal property rights to include samples of DNA. Four states mandate that individuals have access to their personal genetic information and several states have already established well defined penalties, some civil and some criminal for violating genetic privacy laws.
The Problem with Genetic Data
Genetic tests in and of themselves are not bad and are becoming more routinely used for diagnosing medical conditions. The information that is discovered during genetic testing can be valuable when it comes to developing a treatment plan. But there are ways that your genetic data can be used against you as well. The primary problem with not protecting genetic information is one of discrimination. There are already many documented cases of persons who were discriminated against based on their genetic information. An employer may decide to not hire an individual for a job because their genetic makeup can make them susceptible to some diseases. An insurer may choose not to cover a person simply based on genetic information that suggests they are likely to future disabilities. It is likely that if there are not laws put in place to protect genetic data cases of discrimination are going to increase.