Genetic Discrimination: The Best Reason for Universal Healthcare You've Never Heard Of

By Chris Mooney | November 17, 2010 2:48 pm

This is a guest post by Alice Popejoy, composed live with the help of fellow attendees of the National Science Foundation’s “Science: Becoming the Messenger” workshop as part of this previously announced competition. This post is based upon her undergraduate research done at Hamilton College; for more information about genetic information and discrimination see here.

In the X-Men movies, a few individuals have extreme genetic mutations (like the ability to fry things with one’s eyes) that change everything about how they’re treated in society. In the real world, we all have mutations in our genes that can cause adverse health effects.

coffee-mug-with-lipstickAnd though most people don’t know it–or barely think about it–the significance of this fact in light of the health care reform debate is massive. That’s because despite the historic passage of President Obama’s healthcare reform legislation, health costs remain the responsibility of insurance companies and employers.

Why’s that worrisome? DNA is found in every cell of your body and can be legally obtained by anyone who wants it–from, say, the lip of a coffee cup. Or a desktop keyboard.

Employers and insurance companies have an incentive to find out the “flaws” in your genetic code, and use that knowledge to try to save money. For example, they may not hire you if you have a mutated gene for cancer, or heart disease. Or they may charge you higher insurance premiums.

So be on guard: If we’re not careful, we’re looking at a future right out of the movie Gattaca, in which the availability of information about genetic differences between individuals leads to direct discrimination. Say you’ve got the two mutations that cause breast cancer–BRCA-1 and BRCA-2–and you apply for a job. You could be denied because the potential employer finds out somehow and wants to save money by hiring someone else.

Right now, that’s perfectly legal. And it’s happening.

Universal health care will remove these incentives to discriminate against you, based on your genetics, to save private interests money. Maybe we need to reopen the health care debate in a very different context than the one that’s being discussed now.

So, contact your legislator. Or, remove all the DNA from your body. I guess you can imagine the more practical option.

CATEGORIZED UNDER: Guest Posts, Uncategorized

Comments (35)

  1. Cat W

    Genetic non-discrimination laws exist in 34 states and the District of Columbia. While all of these laws prohibit discrimination based on genetic test results and many restrict employer access to genetic information, there could be loopholes.

    What’s a better solution?

    In 2000, President Clinton banned genetic discrimination from the federal employment process. Why not simply extend this ban to every workplace?

  2. Kat W-C
  3. BerkeleyROJC

    This seems a little overwrought. No, a lot overwrought. Gattaca is an extreme scenario involving the search for genetic perfection, which is not what you are discussing. Also, nobody is that good at predicting phenotypes from genotypes for most human diseases right now. There is time to get good policy into place without being dramatic and detracting from a valuable message with scare tactics.

  4. Just found Nemo

    Interesting piece of work to put together in such a short period. Keep it up Alice. Remember “P” is a nucleic base too! Don’t forget about it.

  5. Ethan Hawke

    I, Ethan Hawke, approve this message.

  6. Charles

    Workplace protection is great, but it is the tip of the iceberg in terms of what this information will be used for in the future. Think refrigerators with strong AI that may share your allergy information. Or GPS and genetically informed insurance premiums that adjust to your genetic tolerances of different environmental toxins that you encounter throughout the day. The potential uses are so vast that a blanket protection is the only viable solutions.

  7. Alice Popejoy

    BerkeleyROJC: Thanks for your comment. It is true that high-level analysis of genetic information is only done by labs with highly skilled researchers–right now. The reality is that biotechnologies are booming and the capacity for genomic analysis is growing exponentially. It’s not too far off to imagine a time when anyone will be able to do an at-home analysis of their genome. Companies such as 23andME are already marketing at-home kits for single gene mutations, and you can be sure that they will capitalize on the technologies as soon as they become available.

  8. AJ Roberts

    I don’t think it’s overboard at all considering how long we’ve failed to make any real progress in healthcare reform that makes sense!!

  9. ThomasL

    Interesting,

    But there are other ways to deal with this. Your argument is basically government will somehow be more benevolent with this information – something that can be debated but by no means should be taken for granted. There are many uses for such information, not all of which are directly “profit” driven. It would be interesting to see thoughts on other ways to address such concerns (such as legal requirements) and weigh the pluses and minuses of each.

  10. Bob Thomas

    This doesn’t seem to jive with the GINA Act of 2008 (see below). Am I missing something?

    “The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The new law prevents discrimination from health insurers and employers. The President signed the act into federal law on May 21, 2008. The parts of the law relating to health insurers will take effect by May 2009, and those relating to employers will take effect by November 2009.” (http://www.genome.gov/10002328)

  11. Edge-ucator

    It looks like Bruno Mars is wrong. Individuals may be amazing, but they certainly aren’t perfect. Companies will just have to learn to look the other way from everyone’s filthy DNA. Hitler could have taken a lesson from this blog post Ms. Popejoy. Cheers.

  12. Alice Popejoy

    Bob Thomas — Thanks for your comment! GINA was a great first step in raising awareness about genetic discrimination, but the problem is in the details.

    GINA prohibits employers and insurance companies from “requesting, requiring, or purchasing the results of a genetic test” but it does not prevent those same entities from obtaining DNA off a coffee cup or a piece of hair. As the law currently stands, any biological remnants left behind by a person is considered fair game–for example, the DNA left behind by a suspect in a crime scene.

    Another loophole in GINA is the fact that employers and insurance companies are not prohibited from using genetic information in hiring or coverage decisions if they happen to obtain this information (without asking for it) in a routine request for medical records.

    As personalized medicine becomes mainstream in our delivery of health care, genetic information will be inseparable from those routinely requested medical records and the laws will become irrelevant.

  13. BerkeleyROJC

    Until concrete examples are added to support such dramatic claims, it is overboard, overblown, and overwrought. Cancer is a particularly bad example, because in most non-familial cases, it is a complex disease we have still not figured out how to predict.

  14. Bigby

    The assumption that the government will be completely benevolent is naive in the extreme. Check out government-run health care systems around the world and the first thing you encounter is rationing of care based on prognosis. During the health care debate the story of a woman in Oregan was reported – I actually saw an interveiw with her prior to her passing away from advanced lung cancer. The state run health care system had denied her the drugs that would extend her life because of cost. The pharmaceutical firm that manufactures the drug donated it to her free of charge, extending her life. So, the government condemed her to a premature death. And a private enterprise stepped up and prolonged her life.

  15. Alice Popejoy

    There is no denying that cancer is extremely complex and we don’t yet understand how it arises from particular genetic mutations–indeed in most cases it is a combination of environmental factors and genetic mutations. However, there are certain cases such as the BRCA-1 and BRCA-2 mutations that indicate almost certain development of breast cancer when both are present.

  16. Brian Utterback

    What the commentators here are are missing is you cannot legislate around economics. As genetic testing becomes more common, individuals will have information about their own genetics that is unavailable to the insurers. Those same individuals will opt for greater coverage plans when they know that they are at risk while those that are not will opt for cheaper plans. This will mean that the price of the higher cost plan will have to go higher to compensate, forcing those with less risk out of the plan in a never ending cycle. This will force the higher coverage plans out of business, leaving only the lower coverage plan, which will now have more high risk customers than before, meaning that it will be more expensive. This will cause the lower risk people to forgo coverage entirely, increasing the cost of the remaining plan in another cycle.

    Insurance is a method to spread risk. It is untenable to increase the risk without increasing the costs.

  17. BerkeleyROJC, just because we’re not good at predicting phenotypes from genotypes, doesn’t mean employer or insurers won’t act on that information. Even a low correlation with an expensive outcome could easily be enough to prompt an employer not to hire, for example, or an insurer to deny coverage. There are good although very dated examples in this paper.

    Just because you understand that that causal link is not simple does not mean that they do, too. You give them too much credit!

  18. Interesting article….

  19. Virginia hamilton

    This is fascinating. I want to know more!

  20. Austin Hawkins

    Though I think the development of phenotyping could very possibly lead to such discrimination, this information simply adds to the same debate. The real debate about healthcare is about caring for fellow humans. Should the strong prevail? Yes, say many comfortable americans. Should the strong help the less fortunate? Yes, say socialists, it is better for us all to give equal opportunity to citizens. I think we will see the folly in the lack of investment in education and in the health of our less fortunate brothers and sisters.

  21. Brian Too

    I submit that the problem is more severe than the article contemplates. The entire subject of preexisting conditions is given zero consideration. Yet it is the #1 way insurance companies limit their liability.

    Imagine you are an insurance company. What would you rather focus on? A genetic test that has a predictive capability of perhaps 1% or less? Or a questionnaire/test that can reveal a preexisting question with 100% accuracy? And yes, the applicant can lie. If the insurance company can prove that though (and they are highly motivated to do so), then insurance coverage is cut off immediately and retroactively.

    The truth is that you have to force people to pay. Whether or not they want to. Whether or not they think they need it. Long before they show any symptoms. If the customers are allowed to game the system then they will try to short their coverage until they need medical care. At which time, it’s too late to ask them to pay. We’re talking about average, middle class people here.

    On the reverse side of the ledger, if insurance companies are allowed to game the system, then they have incentives to keep all the sick (or risky) people out of the insurance pool. And this is mostly legal and happening right now.

    The better way to view this is as an annuity. You pay a little bit of money into the system at regular intervals over a long period of time. If you had to pay it all at once, when you get sick, you couldn’t afford it. But if it is a regular, at source deduction, most people can handle the cost.

    This is why income tax is deducted at source. It’s not perfect but at least it accounts for human nature. The tax departments are expert at getting their money and this debate could stand to learn from their experience.

  22. Eve Wildhawk

    New method. The USA has the worst health care system in the developed world and the citizens have just spoken: “we want it worse yet”. If you are in the minority here’s what to do. Develop a co-op, much like a CSA. Grow a doc. It could be Dad or lad, or sis or cousin. Support your doc. Your doc takes care of you. Oh. This is familiar, was it the Marx brothers? Single payer health care &/or limited and regulated insurance are the reasonable solutions for most Americans. Me, I’m for emigration. Thanks, Tea Bags.

  23. Gretchen

    Awesome, Alice! I’m no expert, but considering how much easier it is to regulate the government’s actions than private insurance companies’, I would say DNA is much safer in their hands than anyone else’s.

  24. Alice Popejoy

    Gretchen: Thanks for your comment! But I wouldn’t be so sure. My point is not that the government should keep records of and control who has access to our DNA (which they already do, to a certain extent). It is that NO MATTER WHAT GENES YOU HAVE, you shouldn’t have to pay more for health care than the next person. You can’t control what you were born with, so why should you have to pay more than your genetically gifted neighbor?

  25. Meredith

    Here’s my DNA as my vote.

    The difference in the posts is that one is about my job and my health. Both topics affect me and my ability to provide for my family. The other is interesting but not an immediate concern.

  26. Mary

    Im curious, employers in which fields are more likely to use my genetic information as a means discrimination? I find it hard to imagine the cafe or book store down the street passing on my resume because I’m predisposed to hyperthyroidism, say.

  27. The motion picture film GATTACA was amongst the first to seriously focus on the issue of genetic discrimination in an intelligent way. It rightly pointed out that our capabilities are not limited by our genetic deck of cards, but like poker what we do with them. Someone like the physicist Stephen Hawkings, who is afflicted with amyotrophic lateral sclerosis is probably a fine example of this.

    It is likely that health insurance companies would want to improve their risk profiles by obtaining one’s genetic information just as they want to know about one’s health history and life style. However, everyone is likely to have a mixture of genetic variations that have deleterious and advantageous outcomes. With the sheer complexity of interactions amongst the RNA and protein products of the 23,000 genes of the human genome and our limited understanding of them, the influence of diverse and often ill-defined environmental factors, and the steady pace of medical advancements, it is extremely difficult to predict outcomes with respect to an individual’s health. Insurance only works if there are a large number of active participants, so even potentially dangerous somatic mutations will have to be ultimately tolerated.

    Would it be morally acceptable to charge higher premiums for individuals that have severe genetic defects? Smokers usually pay higher insurance premiums that non-smokers. This seems to be acceptable, because the health risks are much higher in smokers and they apparently have the choice to smoke or not. However, this is not so simple. There are strong environmental and most likely genetic factors at play with respect to the compulsion one may have to continue to practice a very destructive habit like smoking.

    The rates of morbidity and mortality are much higher amongst those with less education and lower incomes. Most of these people would probably rather have jobs with higher incomes and more education, but often because of circumstances beyond their control, like their genetic background, these opportunities are not available to them.

    It does seems that a universal health care system provides a more holistic solution for the potential for discrimination at many levels, including genetic. Americans seem to be generally a lot more fickle about this than people in Canada, Cuba and most other developed countries. Perhaps the genetic discrimination argument will sway a few more in the US to be more empathetic about their less fortunate compatriots.

  28. Greg5

    All the more reason for universal health care – take away the genetic variable from the health care/insurance/government cabal by incremental contributions over time (as mentioned above), like Social Security (except with mechanisms in place to make sure it’s still there when you need it, and not bled off into the general fund), and everyone would be covered no matter what. Seems a no-brainer – how can we call ourselves a ‘civilization’ if we’re not civilized enough to care for even those who can’t care for themselves, especially since we have the money, we just don’t seem to prioritize properly – too busy using it against people while lining the pockets of the multi- multi’s.

    Alice is right – the devil is in the details. That new, watered-down-but-still-historic healthcare reform package is talking pointed to ‘can’t be denied because of pre-existing conditions’, yet last time I checked, the only consequence for an insurance company for doing just that is $100/day. Do the math, as they would, when faced with the prospect of an expensive operation, or just waiting out the clock on a patient. A quick check of the progress of science and technology over the last 50-100 years will show that in the next 10, 25, 50 years we’ll be looking at some very advanced technologies, and we need to be vigilant and pro-active.

  29. linda spaulding

    given that our ethics seem to fall behind our scientific and technological advances, universal health care would be a valuable safety net in this sort of scenario. interesting!

  30. Alex Kerss

    Best argument I’ve heard for socialized healthcare to date, great job Alice, excellent thinking.

NEW ON DISCOVER
OPEN
CITIZEN SCIENCE
ADVERTISEMENT

Discover's Newsletter

Sign up to get the latest science news delivered weekly right to your inbox!

About Chris Mooney

Chris is a science and political journalist and commentator and the author of three books, including the New York Times bestselling The Republican War on Science--dubbed "a landmark in contemporary political reporting" by Salon.com and a "well-researched, closely argued and amply referenced indictment of the right wing's assault on science and scientists" by Scientific American--Storm World, and Unscientific America: How Scientific Illiteracy Threatens Our Future, co-authored by Sheril Kirshenbaum. They also write "The Intersection" blog together for Discover blogs. For a longer bio and contact information, see here.

ADVERTISEMENT

See More

ADVERTISEMENT
Collapse bottom bar
+

Login to your Account

X
E-mail address:
Password:
Remember me
Forgot your password?
No problem. Click here to have it e-mailed to you.

Not Registered Yet?

Register now for FREE. Registration only takes a few minutes to complete. Register now »