DNA Testing and Informed Consent

What happens to the DNA sample that you provide to a DNA testing company? Some of it is used to inform you about your heritage. What about the rest? Some people are concerned that their DNA, or other information, is being used without their consent.

23andMe has a Privacy Statement that notes that your Genetic and Self-Reported information may be used for 23andMe research only if you have consented to this use by completing a Consent Document. You are allowed to withdraw your consent, but doing so doesn’t necessarily mean you have completely opted-out. If you opt-out:

…23andMe will not include your Genetic Information or Self-Reported information in new research occurring after 30 days from the receipt of your request. Any research involving your data that has already been preformed or published prior to our receipt of your request will not be reversed, undone, or withdrawn. You may also discontinue your participation in research by closing your Personal Genome Service account.

You can opt-out of this, but doing so will not erase research or publications that your DNA has already been used in. There’s more:

If you withdraw your consent for research your Genetic Information and Self-Reported Information may still be used by us and shared with our third-party service providers to provide and improve our Services… and shared as Aggregate Information that does not identify you as an individual.

What about AncestryDNA? They have information about Informed Consent. It explains that you can choose to participate in their Ancestry Human Diversity Project. It collects information from your DNA (and more).

You have already decided to send in a saliva sample to get information about your DNA from AncestryDNA. The researchers want to know if you will allow the information obtained from this sample to be combined with other people’s for research.

To participate in this research, project, you will be asked to accept this Informed Consent on this website; accepting the Informed Consent will allow us to use the Information you provide (directly, or by providing consent for us to collect) for the Project. You will also need to read and accept the AncestryDNA Terms & Conditions (as well as the Terms & Conditions of any other of our websites for which you register.)

The Informed Consent page clarifies that you will not be paid to participate in the project, and that AncestryDNA will own the results of the project or any subsequent publication of the results.

Overall, if you have any concerns about your DNA being used without your permission, your best option is not to provide a sample of it to a DNA testing company. It’s also a good idea to read the fine print before you buy the product.

Image by Kevin Krejci on Flickr.

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