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Beacon Senior News

Can you un-sell your personal data?

Jul 26, 2021 12:20PM ● By Karen Telleen-Lawton
keyboard with the key "personal information" where the enter key would normally be

It’s all about personal information. Maybe we should be flattered. Never in the history of humankind has anyone cared more about every detail of our lives, and been willing to pay for it. Should we try to protect our private information from being sold?

I have to admit that I’ve been bothered—more like freaked out—by two recent financial news stories. One is Wells Fargo’s deal with Envestnet, the other is Blackstone’s acquisition of Ancestry.com. Who will have access to my personal information, and what will they do with it? Even if I trust Wells Fargo and Blackstone, they may spin off my personal data to some other company.

Envestnet is a “turnkey asset management platform,” providing tools to help investors manage their money. Wells Fargo’s deal means they’ll now provide their customers with Envestnet apps for spending, saving and planning. Granted, tools like these are invaluable for keeping track of personal budgets and investments, helping small investors become more financially literate. 

However, Envestnet also sells its data to third-party brokers who then may provide the data to other financial entities and investors. The apps are “free,” but not without cost: we’re paying by sharing our financial data. We’re basically still in the Wild West era when it comes to protections regarding how the data might be used. Tailored ads are the least of our worries. What’s more worrisome is the thought of being turned down for a loan, insurance or a job because of what your data may predict about your profile.

If you want to protect your financial data from being shared by your bank, you’ll have to look further than Wells Fargo. Envestnet has made deals in the last two years with Schwab, Citi, and J.P. Morgan. Investment News warns that “[The] industry needs to determine sooner rather than later the best ways to ensure that sensitive consumer information remains protected and that consumers are aware of how data is being used and sold.”

Blackstone’s purchase of Ancestry.com is even scarier for consumers. Blackstone Group Inc is arguably the leader in private equity placement. It buys and sells private companies using investor money and debt. 

“They own health care companies. They own insurance companies. They own retail companies,” explained Michael Roberts, Wharton finance professor. “So they can identify spending behavior, health care expenses, and actual health outcomes for individuals.”

Blackstone sees big dollar signs in genetic data, having paid $4.7 billion for Ancestry. In fact, the same month Blackstone acquired Ancestry.com, Bloomberg revealed a U.S. Securities and Exchange Commission (SEC) filing showing Blackstone would begin to “package and sell data” from the companies it acquires as a fresh revenue stream. 

A Blackstone spokesperson pledges that Ancestry’s data won’t be accessible to any Blackstone employee, its stakeholders, or other companies owned by them. An email to Neo.Life’s Matthew Ponsford said the company is “deeply committed to ensuring that Ancestry has world-class consumer privacy” and the data will “never be part of the effort detailed in the SEC filings. Not just the initial sale.”

Blackstone is judicious to try to assure Ancestry customers that their privacy is intact. Customers can pull their data off the site if they don’t feel secure. But how customers can verify their data is deleted, I don’t know. HIPAA, the Health Insurance Portability and Accountability Act, has been working to protect our medical privacy since 1996. HIPAA does not apply to Blackstone or Ancestry.

Further, Ancestry isn’t the only company finding profit in genetic information. The other big player, 23andMe, negotiated a 4-year deal with GlaxoSmithKline in 2018 to tackle diseases and work on new drugs. After giving customers the opportunity to opt out, 23andMe is sharing de-identified data. 

An Independent Review Board was hired to review the ethics of the deal. “DNA data, by its very nature, cannot be anonymized,” said Pam Dixon, the executive director of the World Privacy Forum. “It’s always going to maintain some semblance of identifiability.” 

You can’t get around “agreeing” to the interminable legal agreements that are standard on every website. Nevertheless, it doesn’t take much extra time to click on the “more info” link and opt out of any sharing choice you have.

Importantly, you should check the privacy settings on any site with which you share information: your bank or brokerage, an ancestry or genetics company, your medical clinic and your insurance company. Choose the strictest privacy allowed. For-profit companies are in business for a profit, not to debate the ethics of sharing your genetic and personal data with companies who could use it to your detriment.