Research Consent in DNA Testing Explained
What you actually agree to when you opt into DNA research at 23andMe, AncestryDNA or MyHeritage, including the GSK pharma partnership and how to opt out.
Every major consumer DNA test offers a research-participation opt-in that is technically separate from the standard terms of service. You can decline it and still get your results. The marketing tends to frame opting in as a routine act of contributing to science, and there is truth in that framing. The legal effect of the opt-in is also a real permission with real downstream uses. We walk through what you are actually agreeing to.
What the research consent typically grants
Across the major services, opting into research generally permits the company to use your de-identified genetic data, your survey answers, and your account-derived information for internal research and for research conducted with academic and industry partners. De-identified in this context means the data is stripped of direct identifiers such as your name and email and tagged with a study-specific ID, not that re-identification is impossible.
The consent also typically authorizes inclusion of your data in research publications and aggregated datasets shared with collaborators. The specifics differ between companies and between successive versions of each company’s consent document, which is why the consent screen at signup matters.
The canonical large example: 23andMe and GSK
The clearest commercial example of where research consent leads is the 2018 collaboration between 23andMe and GSK. The two companies entered a multi-year drug-discovery partnership in which GSK paid for access to de-identified, aggregated genetic data from 23andMe customers who had opted into research. The arrangement covered the use of that data to identify drug targets across a broad set of conditions.
The collaboration was extended and refined through later announcements and ended its exclusivity phase in 2023. The relevant point for a consumer is that opting into research at 23andMe meant your aggregated, de-identified data could plausibly inform the work that produced or informed real pharmaceutical products. Several other testing companies have similar though smaller research collaborations.
What it does not grant
The standard research consent does not authorize a researcher to call you, identify you, or contact relatives identified in your data. It does not transfer your raw, re-identifiable genome to a third party as a standalone file. It does not waive your right to delete your account or to withdraw research consent prospectively.
What withdrawal does not do is retroactively pull your data out of research already completed. Once a study using your data has been published, that publication does not get re-run when you uncheck the box. Most consent documents say this in plain language.
How to opt out, by company
At signup, the research consent screen is usually a separate dialog from the terms of service. The button to decline is sometimes less prominent than the button to accept, but it is present, and declining does not block you from using the service.
After signup, the toggle lives in your account settings under a section variously labelled Research, Research Participation, or Data Sharing. At AncestryDNA it sits under Personal Information then Research. At 23andMe it sits under Settings then Research and Product Consents. At MyHeritage and FamilyTreeDNA, comparable toggles exist under privacy settings.
If you have already taken a test and are not sure whether you opted in, the toggle screen shows your current status. Changing it takes effect for future uses.
How to think about whether to opt in
The trade-off is real. Opting in adds to a dataset that funds science and, sometimes, commercial drug development. It also extends the number of corporate entities that touch your data, including academic collaborators and pharmaceutical partners. The data is de-identified, which substantially reduces re-identification risk but does not eliminate it.
People who decline research consent often do so because they want a narrower set of hands on the data, not because they oppose the research. Both choices are reasonable. The wrong choice is making the decision without reading the screen.
Related reading
For an overview of what third parties can touch your data through various channels, see what third parties can access your DNA. For the company-by-company policy detail, see DNA test privacy policies compared. For the broader consent picture, see DNA test consent: what you agree to. The pillar is at genetic data privacy.