Threats to Privacy Are Limited by New Florida Law

 

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.

*     *     *     *

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 Law
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There are 11 comments.

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  1. Fake John/Jane Galt Coolidge
    Fake John/Jane Galt
    @FakeJohnJaneGalt

    Yes I have.  It is on of the reasons I will not do dna testing.  I see an issue with the without consent provisions.  Government and corporations are great at burying those details in disclaimers or creating leverage situations to get what they want.  Anybody who does not understand that DNA testing firms are creating databases to sell that info to all that will buy.  I can easily see it tied to individual profiles for all sort of things credit, insurance, employment, advertising, and who knows what will happen once the AIs get hold of it.

    • #1
  2. Henry Castaigne Member
    Henry Castaigne
    @HenryCastaigne

    Susan Quinn: What do you think about the risks of DNA testing and abuse?

    I support DNA testing. I want people with tendencies towards schizophrenia or sickle cell anemia to mate with people who do not have such genetic tendencies so their children will prosper. Americans are great and innovation and scientific advancement but we need to keep the government as far away as possible. 

    • #2
  3. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    I can’t help wondering whether for most of us, our privacy has been invaded so often and in so many different ways that when we think of DNA, one of our most intimate and revealing factors, we’ve decided, ah, what the heck; what’s one more violation?

    • #3
  4. Stad Coolidge
    Stad
    @Stad

    I always thought it was a good idea to get DNA from criminals, and for our military to have their DNA profiles on file.   But if it ever got extended to the general population, watch out . . .

    • #4
  5. Caryn Thatcher
    Caryn
    @Caryn

    This has been a concern for many decades.  We discussed it at length in my college and graduate school ethics classes–particularly relating to forbidding its use by insurance companies–and it comes up in consent forms we currently use.  In the latter case the forms include a disclaimer against storage or use of any genetic samples.  In these studies, we aren’t even collecting DNA (usually nasal swabs for bacteria), but it’s enough of a concern that patients are told what we expressly will not do with the samples.  It’s been interesting to watch over the decades since I first became involved back in the mid 1980s.  

    I agree with Stad about getting DNA from criminals and the military, but only for use in narrowly crafted situations such as (sadly) identifying a body or, in a criminal case, with good reasons (ie. rapists, violent felons, etc.).

     

    • #5
  6. Rodin Member
    Rodin
    @Rodin

    Caryn (View Comment):
    particularly relating to forbidding its use by insurance companies

    It is unclear to me why an insurance company would need such data. The concept of insurance is to spread risk, not eliminate it. If pre-conditions cannot be used any longer to deny coverage, then the group profile and premiums change. I understand how it might be useful if the insurance is created subgroups with specific risk ratings, but at some point that is self-defeating because it creates an unmarketable product and generates political heat. 

    • #6
  7. Fake John/Jane Galt Coolidge
    Fake John/Jane Galt
    @FakeJohnJaneGalt

    Rodin (View Comment):

    Caryn (View Comment):
    particularly relating to forbidding its use by insurance companies

    It is unclear to me why an insurance company would need such data. The concept of insurance is to spread risk, not eliminate it. If pre-conditions cannot be used any longer to deny coverage, then the group profile and premiums change. I understand how it might be useful if the insurance is created subgroups with specific risk ratings, but at some point that is self-defeating because it creates an unmarketable product and generates political heat.

    Well many companies self insure health.  If you can use genetics to eliminate risky employees then you end up in a better situation.  

    • #7
  8. Stad Coolidge
    Stad
    @Stad

    Rodin (View Comment):
    It is unclear to me why an insurance company would need such data.

    My guess is that people with certain genetic markers may be highly susceptible to certain diseases.  Thus, insurance companies could define one’s DNA as a “pre-existing condition” and deny coverage (or charge ridiculously high rates) . . .

    • #8
  9. Rodin Member
    Rodin
    @Rodin

    Stad (View Comment):

    Rodin (View Comment):
    It is unclear to me why an insurance company would need such data.

    My guess is that people with certain genetic markers may be highly susceptible to certain diseases. Thus, insurance companies could define one’s DNA as a “pre-existing condition” and deny coverage (or charge ridiculously high rates) . . .

    Except I thought Obamacare ended denials based on pre-conditions. Am I misremembering?

    • #9
  10. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    Susan Quinn:

    ‘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.

    @rodin, I believe you are correct. This applies to the above.

    • #10
  11. The Reticulator Member
    The Reticulator
    @TheReticulator

    Rodin (View Comment):

    Stad (View Comment):

    Rodin (View Comment):
    It is unclear to me why an insurance company would need such data.

    My guess is that people with certain genetic markers may be highly susceptible to certain diseases. Thus, insurance companies could define one’s DNA as a “pre-existing condition” and deny coverage (or charge ridiculously high rates) . . .

    Except I thought Obamacare ended denials based on pre-conditions. Am I misremembering?

    That’s for private insurers. Government insurers can do anything they want.

    • #11