Our DNA Screenings Should Remain Private
Lawmakers should consider the potential ways genetic-test data could be abused to undermine our privacy.
As state lawmakers get to work for 2020, state Sen. Kelli Stargel is attracting attention for a controversial anti-abortion bill.
The Lakeland Republican’s measure would force pregnant minors to obtain parental consent before obtaining an abortion. One complaint registered by critics is that it infringes on these girls’ right to privacy.
It’s debatable, as lawmakers will show us as this proceeds, whether minors should be able to assert such a right when they cannot undergo any other medical procedure - that we’re aware of - without parental consent.
Yet in a different realm, Stargel, in support of Palm Harbor Republican Rep. Chris Sprowls, is doing important work to ensure Floridians, pregnant or not, can maintain the privacy of their health records.
She has introduced the Senate companion legislation to Sprowls’ bill that prohibits life insurers or providers of long-term care coverage from tapping results of genetic tests to deny, cancel, or cap insurance, or to charge consumers different rates. Under the Sprowls-Stargel bill, insurers also would be blocked from soliciting the results from prospective customers or requiring that they furnish them.
Federal and state law already block health insurance companies from this practice. But Sprowls wants to close a “massive loophole,” as he put it, that other insurers could slip through.
According to the News Service of Florida, Sprowls got the idea in December 2017 in seeking to buy life insurance. As he waited on hold for a customer rep, the company played commercials for genetic-testing firms like 23andMe and AncestryDNA.
“And then I wondered,” he said, according to NSF, “how long is it going to be until the person on the phone is going to ask me for that?”
Hopefully the rest of the Legislature and Gov. Ron DeSantis can help with the answer: never.
The market for DNA testing has exploded in recent years.
The MIT Technology Review reported last February that as of 2015 the entire market had gathered just 1.6 million DNA profiles. By last year that number had rocketed to 26 million. 23andMe and Ancestry dominate the field, compiling 9 million and 14 million tests, respectively.
“If the pace continues,” the article observed, “the gene troves could hold data on the genetic makeup of more than 100 million people within 24 months.”
This issue is not necessarily new. States began to deny health insurers access to DNA test results a quarter-century ago.
But Sprowls points out that, as the boom in testing continues, and as we further unlock the mystery of DNA, the potential that other users could utilize this information against us is growing.
The NSF reported California, New Jersey and New York weighed similar bills last year.
Florida, however, could be first in the nation with such regulations.
It is true that DNA testing companies have opt-in provisions that allow customers to authorize sharing results with third parties. For instance, a 23andMe executive told Axios last year that 80% of its customers consent to sharing results with medical researchers.
But seriously, how many of us read closely the “terms and conditions” agreements offered by tech firms, banks, or other companies?
Meanwhile, as Miguel Burger-Calderon, president and co-founder of Ethyca, a data privacy firm, notes, the samples compiled by 23andMe and Ancestry are not considered “medical health data,” and thus are not covered by the privacy provisions of the federal Health Insurance Portability and Accountability Act, or HIPPA. Moreover, wording of opt-in agreements varies by company and exposes test-takers to having genetic data shared in ways they failed to contemplate when consenting.
Lawmakers should consider the potential ways genetic-test data could be abused - by government agencies, law enforcement, employers and drug companies - to undermine our privacy. But Sprowls and Stargel significantly advance privacy protection by cutting off this avenue before life and long-term care insurers head down it.
They deserve their colleagues’ support.