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Have you ever considered how your privacy could be violated through the use of your DNA? Florida legislators have taken this danger seriously by being the first state to expand on federal laws protecting the use of DNA testing results:
‘Given the continued rise in popularity of DNA testing kits,’ Sprowls said Tuesday, ‘it was imperative we take action to protect Floridians’ DNA data from falling into the hands of an insurer who could potentially weaponize that information against current or prospective policyholders in the form of rate increases or exclusionary policies.’
Federal law prevents health insurers from using genetic information in underwriting policies and in setting premiums, but the prohibition doesn’t apply to life, disability, or long-term care coverage.
If you think this is an extreme reaction to the use of our DNA, here is one example of how one couple’s DNA was weaponized:
This isn’t a theoretical concern. In a legal case that’s received plenty of media attention, Marvel Entertainment chairman Ike Perlmutter and his wife allege they had their DNA stolen and tested in a dispute with a neighbor in Palm Beach, Fla. According to the Perlmutters, their DNA was collected without their consent from water bottles and materials they’d touched during a deposition in a lawyer’s office. You don’t need to take sides in that case to understand the implications of allowing people to swipe medical secrets from potential legal adversaries.
Other states have taken steps to try to protect consumers:
In the absence of comprehensive federal genetic privacy regulation, state legislatures have adopted a wide-ranging matrix of laws that typically restrict third parties – such as insurers or employers – from accessing genetic data without consent.
According to the National Conference of State Legislatures (NCSL), Florida is among 16 states that require informed consent for a third party to perform, require or obtain genetic information, among 24 states that require informed consent to disclose genetic information, and among five states that define genetic information as personal property.
Despite the legislation, if DNA test results end up in a person’s health records, insurance providers legally can access it, although the federal 2008 Genetic Nondiscrimination Act (GINA) prohibits them from using that information to deny coverage or increase rates.
In Florida, that federal prohibition also now applies to long-term-care, life and disability insurers.
There are many kinds of abuses that can result from having access to your DNA, as currently seen in Florida:
Among concerns lawmakers may address is revelations several Florida condo associations require prospective residents to submit DNA test results showing they don’t have genetic predispositions to Alzheimer’s, which is legal everywhere but California.
The potential for misuse of this information is endless. As pointed out earlier, the DNA testing services are not the only ones who might release the information. The next time you drink from a bottle of water and leave it behind, you could be vulnerable.
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Although I have already threatened my own privacy by using many services where my personal information is revealed, the consequences of DNA abuse could be especially substantial. That’s one reason I haven’t used the popular testing kits to learn more about my ancestry.
What do you think about the risks of DNA testing and abuse?
[photo courtesy of the National Cancer Institute]Published in