Provision record
23andMe · 23andMe Privacy Statement · View original document ↗

Research Participation Opt-In and Irreversible Data Sharing

High severity High confidence Explicit document language Common · 289 of 352 platforms
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Document Record

What it is

If you previously opted into Research, genetic and health data you contributed may already have been shared with third-party research partners and cannot be recalled, even if you later withdraw consent or delete your account.

This analysis describes what 23andMe's agreement states, permits, or reserves. It does not constitute a legal determination about enforceability. Regulatory applicability and practical outcomes may vary by jurisdiction, enforcement context, and individual circumstances. Read our methodology

ConductAtlas Analysis

Why it matters (compliance & governance perspective)

The policy discloses that Research consent, once acted upon and data shared, creates an irreversible commitment; withdrawal from Research stops future sharing but does not remove already-contributed data from third-party researchers who received it.

Clause Stability Stable

0
Changes
5
Months Monitored
May 12, 2026
First Seen
May 22, 2026
Last Seen
This clause type exists across 5149 other provisions on other platforms.

Change history

added May 21, 2026

This new provision emphasizes the irreversibility of opting out of research and data deletion, establishing a distinct high-severity provision around research participation consequences.

View full change record →

Consumer impact (what this means for users)

Users who opted into Research and whose genetic or self-reported data was shared with academic or commercial partners before withdrawal cannot have that data recalled, meaning third parties may continue to use contributed genomic data indefinitely under the terms of their research agreements with 23andMe.

What you can do

⚠️ These actions may provide transparency or partial mitigation but may not fully address the underlying issue. Effectiveness varies by jurisdiction and individual circumstances.
  • Delete Your Data
    To withdraw from Research and stop future data sharing, sign in to your account at you.23andme.com and update your Research consent preferences in your Settings. Note that data already contributed to Research cannot be recalled.

How other platforms handle this

Glassdoor Medium

We will also provide an individual opt-out choice, or opt-in for sensitive data, before we share your data with third parties other than our agents, or before we use it for a purpose other than which it was originally collected.

Square Medium

to request that your data be transferred to a third party (data portability)

Google Cloud Medium

Your organization may allow you to access and export your data in order to back it up or transfer it to a service outside of Google.

See all platforms with this clause type →
▸ View Original Clause Language DOCUMENT RECORD
"
You can delete your 23andMe account any time. If you do, we will automatically opt you out of Research and discard your sample. Keep in mind this process cannot be cancelled or reversed.

Excerpt from 23andMe's Privacy Statement

ConductAtlas Analysis

Institutional analysis (regulatory & governance intelligence)

REGULATORY LANDSCAPE: Research use of genetic data implicates GDPR Article 9 (special category data) and the research exemptions under Article 89, as well as US Common Rule requirements if federally funded research is involved.

Insight

Unlock the full institutional analysis

Enforcement risk, jurisdiction flags, contract triggers, and due diligence action items.

Applicable agencies

  • Federal Trade Commission (ftc)
    Oversees unfair or deceptive business practices and can investigate companies that mislead consumers about data collection, sharing, or use.
    Who can file: Anyone affected by the company's practices (US or international)
    What you need: Your account details, a timeline of relevant events, and a description of the specific issue
    What to expect: Complaints inform FTC enforcement priorities and investigations but do not result in individual resolution or compensation
    File a complaint →

Applicable regulations

BIPA
Illinois, USA
CCPA/CPRA
California, USA
Connecticut Data Privacy Act Amendments
US-CT
CAN-SPAM
United States Federal
FTC Act Section 5
United States Federal
GDPR
European Union
HIPAA
United States Federal
Indiana Consumer Data Protection Act
US-IN
Kentucky Consumer Data Protection Act
US-KY
Universal Opt-Out Mechanism Expansion 2026
US

Provision details

Document information
Document
23andMe Privacy Statement
Entity
23andMe
Document last updated
May 5, 2026
Tracking information
First tracked
May 12, 2026
Last verified
May 12, 2026
Record ID
CA-P-011717
Document ID
CA-D-00148
Evidence Provenance
Source URL
Wayback Machine
Content hash (SHA-256)
dc3df5a6c7d5e8a0428d5086d3cf2f15f5072911b18402048166183c31b60dd4
Analysis generated
May 12, 2026 13:37 UTC
Methodology
Evidence
✓ Snapshot stored   ✓ Hash verified
Citation Record
Entity: 23andMe
Document: 23andMe Privacy Statement
Record ID: CA-P-011717
Captured: 2026-05-12 13:37:21 UTC
SHA-256: dc3df5a6c7d5e8a0…
URL: https://conductatlas.com/platform/23andme/23andme-privacy-statement/provision/CA-P-011717/research-participation-opt-in-and-irreversible-data-sharing/
Accessed: Sept. 8, 2026
Permanent archival reference. Stable identifier suitable for legal filings, compliance documentation, and research citation.
Classification
Severity
High
Categories

Other risks in this policy

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Frequently Asked Questions

What does 23andMe's Research Participation Opt-In and Irreversible Data Sharing clause do?

The policy discloses that Research consent, once acted upon and data shared, creates an irreversible commitment; withdrawal from Research stops future sharing but does not remove already-contributed data from third-party researchers who received it.

How does this clause affect you?

Users who opted into Research and whose genetic or self-reported data was shared with academic or commercial partners before withdrawal cannot have that data recalled, meaning third parties may continue to use contributed genomic data indefinitely under the terms of their research agreements with 23andMe.

How many platforms have this type of clause?

ConductAtlas has identified this type of provision across 289 platforms. See the full comparison.

Is ConductAtlas affiliated with 23andMe?

No. ConductAtlas is an independent monitoring service. We are not affiliated with, endorsed by, or sponsored by 23andMe.