Data Processing Consent

Version 1.0 · Effective 2026-04-20

1. Why this is a separate consent

The Terms of Service govern your use of Lived, and the Privacy Policy explains what personal data we collect and why. Two kinds of processing — AI-assisted analysis of your content, and use of de-identified aggregates for research — go beyond what is strictly necessary to deliver the Service, and may involve health data, which the EU/UK GDPR and the Turkish KVKK treat as a special category. We therefore ask for your explicit consent here, separately from the other two documents.

2. AI-assisted processing

When you consent, Lived may pass content you submit (your stories, questions, family- member notes, and the community discussions around them) to AI models in order to:

  • extract medical entities (conditions, treatments, outcomes) so your content can be linked to the right communities and references;
  • generate short summaries and suggested tags that you can accept or edit;
  • power the in-product chatbot that helps you search the platform and draft stories;
  • detect content that violates the Terms (spam, harassment, regulated-product marketing, attempts to deanonymise other users).

AI models run on two tiers: (a) self-hosted models we operate inside the EU, and (b) third-party models accessed via API under a Data Processing Agreement that prohibits the provider from using your content to train their models and requires deletion after processing. The list of current providers is available on request at privacy@everygene.com.

AI output is not medical advice. It can be wrong, out of date, or omit important context. Do not act on AI-generated summaries without verifying with a qualified clinician.

3. Research use of de-identified aggregates

Subject to your consent, Lived may include your content in de-identified research datasets that help us and our research partners understand how patients experience treatments, identify gaps in published evidence, and improve the platform. De-identification means:

  • your name, email, and any other directly identifying fields are removed;
  • free-text content is passed through an automated redactor that removes names, contact details, and dates of birth before it enters the research dataset;
  • research outputs are always aggregated (counts, proportions, cohort-level statistics) — no individual record is exported;
  • partners accessing the dataset are bound by a written agreement that forbids re-identification attempts and limits use to a named research question.

We do not sell raw personal data to anyone, for research or otherwise. Aggregated, de-identified research outputs may be published in academic venues.

4. Automated decision-making

Lived does not use AI-assisted processing to make decisions that produce legal effects about you or significantly affect you (for example, we do not use it to make eligibility, pricing, or clinical decisions). The tagging and moderation outcomes are reversible and can be reviewed on request.

5. Withdrawing this consent

You can withdraw this consent at any time from the profile page (once the toggle ships) or by emailing privacy@everygene.com. Withdrawal:

  • stops future AI processing of your content;
  • removes your content from future research datasets — content already included in a frozen, fully de-identified dataset that has been shared with a partner cannot be recalled from that copy, because by then it is no longer linked to you;
  • does not affect the lawfulness of processing carried out before the withdrawal;
  • does not affect your ability to use the rest of the Service. Some AI-assisted convenience features may be degraded or disabled.

6. Record of your consent

When you accept this consent at registration, we record the consent type, the version shown above, the timestamp, your IP address, and the user-agent string. This record is retained for the lifetime of your account plus 6 years, so that we can reconstruct which version of the consent applied to which processing activity. See the Privacy Policy for the overall retention schedule.

7. Changes to this consent

If we change the scope of AI-assisted processing or research use materially, we will bump the version shown above and — once the re-consent flow ships — prompt you to re-accept on next sign-in. We will not apply a broader scope to content collected under an earlier version without a new, explicit consent.

8. Contact

Questions about this consent or withdrawal requests: privacy@everygene.com.