Below are the statement and responses to questions KPIX 5 posed in regards to a recent special report on the accuracy of DNA testing posed to 23andMe.
It is expected that identical twins receive identical results through the 23andMe Personal Genome Service (PGS), as they share 100% of their DNA. Any marginal differences can typically be corrected by viewing their Ancestry Composition in the “90% Conservative” confidence level, rather than “50% Speculative”, where the Ancestry Composition feature defaults. It is also expected that the fraternal twins would share the same amount of DNA as full siblings – around 50%. The randomness of DNA inheritance from each parent results in differences in ancestry, health, and the amount of DNA shared with other relatives. As such, it is not unusual for one fraternal quadruplet to have a different amount of British and Irish DNA compared to their sibling.
Does a person who currently utilizes your DNA testing service to determine their ethnic heritage, have to participate in the DNA match option?
No. DNA Relatives is an entirely optional feature. Choosing not to participate will not affect access to the customer’s genetic data or use of the Personal Genome Service.
We don’t default our customers into this type of experience, seeking instead to maintain our customers’ privacy. Customers will always need to take a specific action to share their information with other 23andMe users. DNA Relatives, 23andMe’s relative finding feature, is subject to an opt-in requirement before information is shared with potential relative matches. It is entirely optional to participate in this feature. When a customer’s results are ready within their account, they are asked to remain opted out of the feature, or opt in to participate. If you opt-in you elect to share as much or as little as you’d like, and you can opt-out at any time.
How long has that been the policy?
Viewing close relative relationships (1st cousin or closer) has always been opt-in. Prior to October 2014, viewing distant relatives was opt-out. That changed in October 2014, when viewing all relatives – close and distant – was changed to an opt-in feature.
Please visit this 23andMe Help Center article for additional details. The language surfaced to customers regarding unexpected relationships that can be discovered in DNA Relatives feature can be found here under “Family.”
The 23andMe Privacy Statement also details the following in the third item under CONSENT TO THE TRANSFER OF YOUR PERSONAL INFORMATION:
“We give you the ability to share information with other individuals through features like DNA Relatives. You will always need to take a positive action to share your information, for example, DNA Relatives is subject to an opt-in requirement before we share your information with potential relative matches.”
The full 23andMe Privacy Statement can be found here. In summary, 23andMe will never release its customers’ individual-level Genetic Information and/or Self-Reported Information to any third party without asking for and receiving their explicit consent to do so, unless required by law.
23andMe requires the ability to share certain information with third-party service providers as necessary to provide the Services. Service providers are third-parties (other companies or individuals) that help 23andMe provide, analyze and improve 23andMe Services. For example, 23andMe works with third-party laboratories and contractors to process and analyze saliva samples for purposes of generating Genetic Information.
When it comes to providing personal or identifying information when submitting your DNA or setting up an online account:
When a customer purchases the 23andMe Service, creates an account, and registers their kit 23andMe collects personal information, such as their name, date of birth, billing and shipping address, payment information (e.g., credit card), and contact information (e.g. email and phone number). Per the 23andMe Terms of Service, customers need to provide true Registration Information in order to participate. In other words, customers must use their true name and birthdate when creating an account and register their kit.
23andMe has designed the Service to give customers control over how much information they share. That includes giving customers the prerogative to use a pseudonym when connecting with other 23andMe members, if they wish. Once a kit has been registered, the customer may change their profile name to any name they wish to use from within their account settings.
You can also download your 23andMe genetic information and close your account at any time.
What information is subject to subpoena?
The five primary types of Personal Information collected through the 23andMe Service and website and how 23andMe uses them are clearly defined in the Terms of Service. Under certain circumstances this information may be subject to subpoena. 23andMe uses all legal measures to resist any and all requests for information in order to protect the privacy of its customers.
To date, 23andMe has successfully challenged the very few requests we’ve received (5 requests over 11 years) and has not released any information to law enforcement. The 23andMe Transparency Report details the number of law enforcement agency requests for information 23andMe has received and the number of requests that 23andMe complied with, in whole or in part, here.
What information can other clients (i.e. potential DNA matches) see online? (i.e. can you use a fake name for your online account?)
If a customer chooses to participate in DNA Relatives, their matches – who must also have opted in – will be able to view the following information:
Display name (as determined by the customer)
Profile sex (Male/Female)
Profile picture (not required)
The percent DNA and number of segments shared, but not the location of those segments
Relatives in Common
Customers may choose from several display names (how the customer’s profile name will appear to genetic relatives) options. Customers can choose to participate using their full name, initials, or a combination of the two. As previously mentioned, customers must use their true name and birthdate when creating an account and registering their kit but may change their profile name from within their account settings.
If you delete your account:
If a customer no longer wishes to participate in 23andMe Services or no longer wishes to have their personal information be used, they may close their account by sending a request to Customer Care. When closing an account, 23andMe removes all Genetic Information within the customer’s account (or profile) within thirty (30) days of receipt of their request.
Information may be retained, as stated in any applicable Consent Document, Genetic Information and/or Self-Reported Information that the customer has previously provided and for which they have given consent to use in 23andMe Research cannot be removed from ongoing or completed studies that use the information. Also, 23andMe retains limited Registration Information related to their order history for accounting, audit and compliance purposes.
By agreeing to the 23andMe Terms of Service, customers give 23andMe a license to use their information in certain ways. Specifically, customers agree to give 23andMe a license to perform the technical steps necessary to provide, analyze and improve the Services. If a customer chooses not to have their sample stored, i.e. declines consent to the Biobanking Consent document, their saliva sample and DNA will be destroyed.