The attorneys general of several states warned their citizens to delete their genetic data.
Californiaurged its citizensto request that 23andMe delete their data and destroy their spit samples.
While 23andMe has warned customers all along about everything that is currently happening, many are stillsurprised and concerned.
The fate of the trove of personal information 23andMe has gathered over the years has wide-ranging implications for consumers.
Im alawyer and bioethicistwho has been studying direct-to-consumer genetic testing for almost a decade.
What is 23andMe?
Over15 million consumersbought 23andMe, and the vast majority consented to its research.
At its peak, the company wasvalued at US$6 billion.
What kind of data does 23andMe collect?
The company then collected information fromsurvey questionsabout their personal health and beyond, such asdrinking habitsandrisk tolerance.
This makes the 23andMe dataset potentially very private and very valuable.
At first, drug companies seemed to agree.
GlaxoSmithKline also made a $300 million equity investment in 23andMe.
When 23andMe went public in 2021, its$6 billion valuationreflected the promise of this business model.
What should 23andMe customers worry about?
But once that stage is through, what exactly should customers worry about?
First, law enforcement could use genetic information in civil or criminal cases.
This happened in 2018, when police used the genetic testing company GEDmatch to helpidentify the Golden State Killer.
Police pretended they were customers looking for genealogy data and sent in anold crime scene blood spot.
While this was in violation of GEDmatchs own policies, the evidence was successfully used in court.
It does not, however, protect against discrimination in long-term care or life insurance.
Much of this information could be embarrassing if it were inadvertently or intentionally revealed, such asa persons intelligence.
It could be used for targeted advertising or to build algorithms that exploit a persons vulnerabilities.
I believe consumers are right to be worried about how their genetic data could be misused.
I am deleting my own 23andMe data.
That information is valuable to more people than just you.
Kayte Spector-Bagdady, Associate Professor of Obstetrics and Gynecology,University of Michigan.
This article is republished fromThe Conversationunder a Creative Commons license.
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