Digging through myths and rumors around DNA privacy

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Image credit: Nature

Every once in a while, untruths spread through the genetic genealogy world that have the potential to do great damage: damage to adoptees seeking their biological families, to genealogists hoping to tackle brick walls, and to a thriving new tech industry that enhances an established, traditional hobby.  So, every once in a while, we need to correct the record.

The issue I’m concerned about today is the compound myth that some of the DNA companies are selling our data without our consent; that we are contractually required give them free access to our data in order to test; and that our data is being uploaded to sites like GEDmatch, MyHeritage, and Family Tree DNA to re-identify us. None of those things is happening, and these false rumors need to be squelched whenever they appear.

Related article:  Genetic crystal ball? Forecasting 5 serious diseases with algorithm that checks 6.6 million DNA spots

FACT:  DNA Companies Are Not Selling Our Data Without Our Permission

None of the major testing companies—AncestryDNA23andMeMyHeritageFamily Tree DNA, or Living DNA—sell our data to third parties without our permission.

FACT:  Company Research Programs Are Optional

All five of the main testing companies occasionally conduct research studies, either in-house or using outside collaborators, based on the genetic data of their customers.  They only do so with the explicit, informed consent of each individual research participant, in line with universal research protocols for studies involving human subjects.

Read full, original post: Correcting the Record on Privacy

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