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DNA Testing and Your Privacy

August 2017

Have you considered DNA testing to determine your ancestry, health risks, or for other reasons? The direct-to-consumer DNA (or genetic) testing industry has been growing rapidly. There are many companies that provide test kits that allow an individual to submit a sample of saliva or blood and receive a report several weeks later. Here are some important things you need to know before you opt for testing.

What is DNA testing?

It is estimated that a person's genome, which is their complete set of DNA, contains 20,000 to 25,000 genes. While 99.9% of the genome is the same in all human beings, the remaining 0.1% is unique to most individuals, the exceptions being identical twins (or triplets, etc.). This uniqueness means your DNA can be used to identify you. DNA testing uses laboratory methods to look at various genes. There are many different types of tests such as ancestry testing, paternity testing, diagnostic testing, research testing, and health risk testing.

Protect Your Privacy

  • Don't be fooled by ads.
  • Do your research.
  • Read the fine print.
  • Make an informed decision.

DNA testing can impact your privacy

You should protect your DNA just like you protect your personal and financial information. You don't want it to be used without your consent or misused. A study in 2015 found that the privacy policies of many of these testing companies focus more on the data collected on their website than how they will protect your genetic data. The study also found that 72% of the companies reserved the right to change the contract after the consumer accepted it.

Before you submit your DNA sample, you should get answers to these questions.

  • Will the DNA sample be retained or destroyed? Do you have to request that it be destroyed?
  • How will all of your information (DNA, test results, identifying) be used?
  • What identifiable information will be shared with third parties? Can you see the privacy policies of those third parties? Can you opt out of sharing?
  • Will your information be placed on a public database?
  • Will your DNA and/or other personal information be sold or provided to third parties for research? Does it require your consent?
  • Will the company inform you if they change their privacy policy? Can you opt out or delete your information if you disagree with the changes?
  • If the company is sold, will you be allowed to delete all of your data and/or your personal information before it is transferred to the new company?
  • Is your consent required to allow research partners, consultants, or third parties to access your DNA, DNA test results, and personal information?
  • Does the company accept any liability when there is unauthorized access to your information?

DNA test results cannot be used by health insurance companies or by employers as a result of the Genetic Information Nondiscrimination Act of 2008 (GINA). GINA protects people from discrimination by health insurers and employers on the basis of DNA information but does not cover life insurance, disability insurance and long-term care insurance.

Don't be fooled by ads

Do your research before you spend your money. Read the fine print. These resources can help you make an informed decision.

Ancestry DNA Testing and Privacy: A Consumer Guide from the Council for Responsible Genetics looks at the science, business, and privacy issues of ancestry testing.

Direct-to-Consumer Genetic Tests from the FTC focuses on medical genetic testing.

 

 

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