How to keep your sensitive DNA information private

Genetic testing, where a company examines your DNA, often from a saliva sample, and sends you a report about your family background or your likelihood for developing certain health conditions, is all the rage. It sounds like a great idea, but can you trust a company when it promises to keep your sensitive DNA data private?

Vitagene, a San Francisco-based DNA testing company, promised consumers that it exceeded industry-standard security practices for maintaining the privacy of people’s sensitive health and genetic information. However, the Federal Trade Commission said the company didn’t keep that promise. It used a well-known cloud service provider to store people’s confidential information but didn’t use built-in cloud security measures. That made it possible for anyone with internet access to see the detailed health reports of nearly 2,400 consumers and raw genetic data of at least 227 others.

To settle the case, the company will carry out a comprehensive security program verified by a third party approved by the FTC.

If you’re considering using a DNA testing service, here are some things to consider, advises Jim Kreidler, consumer education specialist:

• Know that your DNA data is sensitive. There’s a law to protect you from discrimination based on genetic information when you’re trying to get work or health insurance. But that law doesn’t apply if you’re trying to get disability or long-term care insurance.

• Do research. Read and understand the company’s “terms of use” before you buy. Who will have access to your data? How will the company protect your privacy and keep your genetic information safe?

Here are additional tips from Consumer Reports on what people should know about DNA testing:

Privacy policies can change. Companies can change their privacy policies at any time, although those changes can’t apply to previously collected data.

HIPAA doesn’t protect your data. It typically doesn’t apply to direct-to-consumer genetic testing companies. Another federal law does prevent employers and health insurance companies from using the results of a genetic test to discriminate against you, but not other entities or types of insurance companies.

Opt out of research. It can mean sharing everything you do on the service’s site, not just your DNA info.

Keep your DNA results off social media. Find a more secure way to share health information, including the results of DNA tests.

Consider deleting your data. If you’ve taken a direct-to-consumer genetic test, you may want to consider deleting your data.

Protect yourself from tracking. Many companies provide a way for consumers to block the company from tracking their activity using cookies. Select that option. Also, regularly clearing cookies is an important privacy habit. You can also use a service that protects your Internet activity from being tracked.

Again, it’s important to protect yourself as a consumer on this important issue.

Comments

[Deane Rimerman]

However there's also a great reason to make your genetic info available to law enforcement and similar investigators, especially if you have a creepy uncle that you always thought must have a lot of dark secrets. Because a huge number of serial killers from long ago have finally been tracked down and thrown in jail because their family members were curious about doing genetic testing.