Direct-to-consumer genetic testing services such as 23andMe have exploded in recent years, providing consumers accessible information about their ancestry, health predispositions, and more. Users may then wish to delete their genetic material from these platforms altogether. This decision is usually driven by privacy concerns, changing life circumstances or other personal factors. Data Privacy OverTraders.com takes your data privacy seriously. This guide is meant to provide you with sufficient information to remove your genetic data from 23andMe and similar services. This article will walk you through the process of deleting data and properly disposing of samples. You’ll come away with a concrete understanding of the major impacts these actions have.
Steps to Remove Your 23andMe Data
Here’s how to delete your genetic data from 23andMe. It’s important to read these directions closely and be sure you understand how to proceed so that your data is fully deleted from their systems. More than just empowering users, the process is designed to provide users control over their own information, in line with privacy regulations and user expectations.
Deleting Your Account
The most thorough method for getting your data off the site is deleting your complete 23andMe account. This single act deletes everything connected to it, including your own genetic data, demographic information, and the research you have contributed to. Here’s how to do it:
Go to 23andMe.com and sign in using your username and password.
Navigate to Account Settings: Scroll to the bottom of the page and find the “23andMe Data” section.
Initiate Data Deletion: Click the button that says "Permanently Delete All Records."
Confirm Deletion: Follow the prompts to confirm your decision. You will be asked to confirm the request, and possibly reenter your password.
Wait for Processing: After confirming, it may take up to 30 days for the deletion to be fully processed.
Removing Specific Data
Deleting your whole account is the most complete step, but users can take action on individual data pieces. This might involve removing consent for participation in research studies or deleting reports at the individual level.
- Revoking Research Consent:
Go to the account settings (/) page.
- Locate “Research and Product Consents.”
Remove your consent for research participation.
Deleting Genetic Data:
Navigate to your 23andMe account.
Scroll down to the “Delete Data” subsection.
Enter your AWS account id in the box to confirm, and click the red Permanently Delete Data button.
It's important to note that even after deleting specific data, some residual information might remain in 23andMe's archives for a limited time, as per their data retention policies.
How to Dispose of Your 23andMe Sample
Once you get your genetic results back, you may be left holding the very saliva sample collection kit. Proper disposal of this sample is the best way to protect your genetic material from being misused or mishandled. Key points 23andMe does not automatically return or destroy your sample. The onus is on the user to deal with the disposal.
Proper Disposal Methods
The recommended method for disposing of your 23andMe saliva sample is to:
Ensure the collection tube is tightly sealed to prevent leakage.
Protect the tube Wrap the tube in a protective material like bubble wrap or even a plastic bag.
- Dispose in the Trash: Place the wrapped tube in your regular household trash.
No public disposal of the sample, including flushing down the toilet or throwing in public trashcans. These regular methods can be detrimental to our environment and health.
Considerations Before Disposal
Before disposing of your sample, consider the following:
Backup Your Data: Ensure you have downloaded and saved any genetic reports or raw data you wish to keep. After the sample has been used up, you’ll no longer have the original genetic material at your disposal.
- Review 23andMe's Policy: Check 23andMe's current policies on sample retention and disposal, as these may change over time.
If you are particularly concerned about privacy, you may consider destroying the sample tube before disposal to further protect your genetic information.
Understanding the Implications of 23andMe Data
Here are a few interesting implications of deleting your data from 23andMe that all users must consider. These include the potential loss of access to insights, the impact on research contributions, and the legal rights surrounding genetic data privacy.
What Happens to Your Data After Deletion?
Once you delete your data from 23andMe, the following typically occurs:
23andMe removes your genetic data and personal information from their active databases.
- Anonymized Data: Anonymized or aggregated data derived from your genetic information may still be used for research purposes, provided it cannot be linked back to you personally.
Your 23andMe account is closed, and you lose access to your reports and features.
- Communication Ceases: You will no longer receive updates or communications from 23andMe.
Here are five things you should know about how 23andMe removes your personal data. They can retain anonymized information to study and develop their products.
Potential Consequences of Deleting Your Information
Deleting your 23andMe data can have several potential consequences:
- Loss of Insights: You will lose access to any ancestry, health, or trait reports generated from your genetic data.
You will no longer receive updates or new insights based on ongoing research.
- Reversibility: Deletion is generally irreversible. If you plan to take 23andMe on your next adventure with you, you’ll have to purchase an additional kit. After that, all you have to do is send in a new sample.
If you have previously consented to research, your data will no longer contribute to ongoing studies, potentially impacting the results.
Users need to be fully informed to meaningfully consider these tradeoffs before choosing to remove their data. We recommend downloading and saving any key reports or raw data you might need in the future before moving forward with deletion.
23andMe has laid out very clear policies about their genetic data. Moreover, California statutes such as the Genetic Information Privacy Act (GIPA) and the California Consumer Privacy Act (CCPA) give consumers rights over their genetic information. Thanks to GIPA, California consumers can easily delete their account and genetic data and have their biological sample destroyed. The CCPA grants California consumers the right to delete personal information, including genetic data, from businesses that collect it. These laws give consumers the tools to determine who has access to their genetic information and hold companies responsible for maintaining their privacy.
Users should be able to make informed decisions about their genetic data privacy with services like 23andMe. They do this by knowing the process for deleting data, disposing of samples, and what these actions entail. OverTraders.com is committed to the empowerment of all users. Then, we provide them the knowledge and tools to help them navigate the complexities of modern data privacy.
