Genetic testing companies maintain databases of genetic information on millions of people who have used their services to obtain information on their family history and health. These companies released guidelines this week regarding the protection of this sensitive data, including the commitment to transparency and agreements that companies will only share DNA data if they first obtain consent from users. The guidelines also state that users must be able to delete their data upon request and ban the sharing of their data with law enforcement of insurance companies. This data remains highly valuable to the pharmaceutical industry and others who can use it to extend research on a wide range of health issues.
Source: 23andMe and Other Genetic Testing Companies Release Guideline on How to Handle DNA Data – Nextgov
