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

Research Consent and Pharmaceutical Data Sharing

High severity Unique · 0 of 343 platforms
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Document Record

What it is

If you opt into the Research program, 23andMe may share your de-identified genetic and health data with third-party researchers, including pharmaceutical and biotech companies, to conduct studies on disease and drug development.

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 provision establishes the operational scope of data utilization beyond individual health reporting, creating a revenue model dependent on research data licensing. This authorization distinguishes 23andMe's business model from ancestry-focused services and structures user data as a resource for pharmaceutical development pipelines.

Recent Activity

This document changed recently

Medium May 5, 2026

The updated privacy statement no longer explicitly directs users to a separate Medical Record Privacy Notice for telehealth services or explains that medical information collected through telehealth is governed by different privacy rules. Previously, the policy stated that users choosing telehealth services coordinated through 23andMe would find healthcare privacy protections described in a separate notice. That reference is now absent from the main privacy statement. Users seeking privacy information specific to telehealth services will need to determine independently whether a separate notice exists or contact 23andMe directly using the provided contact information.

View change record →
Medium Mar 23, 2026

The updated privacy statement no longer explicitly discloses a separate Medical Record Privacy Notice that previously described how medical information is used, disclosed, and maintained for telehealth services. Users who receive telehealth services coordinated through 23andMe may now lack clear notice of which privacy framework governs their medical records, since the reference to that parallel notice has been removed. The organizational scope change from '23andMe Research Institute' to '23andMe' narrows the explicitly named entities responsible for the policy, though operational impact depends on how these entities actually function.

View change record →

Clause Stability Stable

0
Changes
3
Months Monitored
Apr 3, 2026
First Seen
Apr 10, 2026
Last Seen
This clause type exists across 1153 other provisions on other platforms.

Change history

removed May 21, 2026

The removal of this high-severity provision regarding pharmaceutical data sharing represents a significant change in transparency about third-party research commercialization, though content may be integrated into other provisions.

View full change record →

Consumer impact (what this means for users)

Consumers who opt into Research may have their genetic data used in commercial pharmaceutical research, with potential financial benefits accruing to 23andMe and its partners rather than to the consumer. This consent is separate from the main service and can be withdrawn at any time through account settings.

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.
  • Opt Out of Arbitration
    Log into your 23andMe account, navigate to Settings, and locate the Research consent section to withdraw your consent to research participation at any time.

How other platforms handle this

YouTube Kids Medium

We may share individual user information with companies, organizations or individuals outside of Google when we have parental consent.

MetaMask Medium

We may share your personal information with our affiliates, meaning entities that control, are controlled by, or are under common control with Consensys. We also share information with service providers who assist in operating our services, subject to confidentiality obligations.

Ledger Medium

At Ledger, earning and maintaining our users' trust is a top priority. That's why we are deeply committed not only to protecting your privacy and securing your personal data, but also to being fully transparent about how we handle it.

See all platforms with this clause type →

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ConductAtlas Analysis

Institutional analysis (Compliance & governance intelligence)

The Research consent program implicates CCPA's 'sale' and 'sharing' definitions, GDPR Article 9 special category data requirements, and FTC oversight of data broker-adjacent practices; compliance teams should evaluate whether research data sharing constitutes a 'sale' under applicable state privacy laws.

Full compliance analysis

Regulatory citations, enforcement risk, and due diligence action items.

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Applicable agencies

  • FTC
    The FTC has jurisdiction over unfair or deceptive data practices and oversight of health data sharing with commercial third parties.
    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
March 20, 2026
Last verified
March 20, 2026
Record ID
CA-P-000899
Document ID
CA-D-00148
Evidence Provenance
Source URL
Wayback Machine
Content hash (SHA-256)
844495d7dee785114a99561b45c570c06ec624efeede6528fc52ced0ba522f1b
Analysis generated
March 20, 2026 10:27 UTC
Methodology
Evidence
✓ Snapshot stored   ✓ Hash verified
Citation Record
Entity: 23andMe
Document: 23andMe Privacy Statement
Record ID: CA-P-000899
Captured: 2026-03-20 10:27:43 UTC
SHA-256: 844495d7dee78511…
URL: https://conductatlas.com/platform/23andme/23andme-privacy-statement/research-consent-and-pharmaceutical-data-sharing/
Accessed: July 4, 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 Consent and Pharmaceutical Data Sharing clause do?

The provision establishes the operational scope of data utilization beyond individual health reporting, creating a revenue model dependent on research data licensing. This authorization distinguishes 23andMe's business model from ancestry-focused services and structures user data as a resource for pharmaceutical development pipelines.

How does this clause affect you?

Consumers who opt into Research may have their genetic data used in commercial pharmaceutical research, with potential financial benefits accruing to 23andMe and its partners rather than to the consumer. This consent is separate from the main service and can be withdrawn at any time through account settings.

Is ConductAtlas affiliated with 23andMe?

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