The Attorney General provides Consumer Alerts to inform the public of unfair, misleading, or deceptive business practices, and to provide information and guidance on other issues of concern. Consumer Alerts are not legal advice, legal authority, or a binding legal opinion from the Department of Attorney General.
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There are many reasons why individuals might choose to have their DNA tested. Reasons might include medical testing, entertainment, or genealogical research. The results of DNA testing done for medical purposes by a healthcare provider are treated as medical records and are strongly protected by federal privacy laws like the Health Insurance Portability and Accountability Act. But the results of DNA testing done by direct-to-consumer genetic testing services for fun or genealogical research are not medical records and are not protected by these laws.
Commercial genetic testing companies collect and store DNA information from their customers. They provide account holders with their family history and potential health risks. The companies will provide other information based on the customer’s DNA. They may also use consumer-provided data for medical research. Customer information may be shared with pharmaceutical companies or other third parties, if consumers give consent.
Those who use these services should be aware of the potential risks. Data security risks may come from data breaches, changes to the company’s privacy policy, or corporate finance issues. For example, if the company files for bankruptcy or is sold, its handling of stored genetic data may be affected. Consumers should remain vigilant regarding their data. This will help ensure that their personal information remains protected.
After creating an account and receiving their report, some customers may have no more use for the service. They should consider deleting their accounts. Then they should request the destruction of any stored data. To prevent unauthorized access or misuse of their data, account holders should:
Most genetic testing services should have instructions for completing the above actions on their website.
High demand from consumers may cause long wait times or site access disruptions. Account holders should continue trying to delete their accounts. They should also monitor information from the company regarding data protection measures.
Genetic testing services and personal data usage are continuing to evolve. Consumers should use caution when sharing sensitive personal information online. They should also regularly review the privacy policies of the companies they use. This will help keep their data secure.
Several states have comprehensive privacy protection laws that give residents the right to data deletion and other personal information protections. Such a law has been introduced, but not yet passed, in Michigan.
Consumers who suspect their genetic data has been compromised can report their concerns to the Michigan Attorney General’s Consumer Protection Team.
Consumer Protection Team
P.O. Box 30213
Lansing, MI 48909
517-335-7599
Fax: 517-241-3771
Toll-free: 877-765-8388
Online complaint form