With the US economy in recession and socialized medicine unlikely, healthcare is becoming precious. How precious, you may ask? Well, Terri Carlson is willing to marry you for your healthcare. This 45 year old woman suffers from a genetic condition, C4 Complement Deficiency, which causes her body to attack itself (similar to Lupus). Faced with skyrocketing health costs, and unable to get insurance (she’s currently on COBRA), Terri did the only thing she could do: she built a website and got on YouTube. Miss Carlson is (very) desperately seeking a mate, a healthcare husband, she can partner with to save her from financial ruin and death. Her site is focused on healthcare reform, and tells her story with a great deal of gallows humor. Needless to say, people love it. You can see one of her solicitation videos below. While her actions are a rallying cry for those seeking new legislation to “fix healthcare”, Carlson’s situation could fall under a statute already on the books: GINA. The Genetic Information Nondiscrimination Act of 2008 keeps insurance companies from using genetic data to deny you coverage. Could it save Terri from a mate worse than death?
Do you have great health insurance? Want a wife? Then the following message is for you.
The way that GINA is written protects US citizens from being denied employment or insurance coverage based on genetic tests or family history. It also keeps insurance companies form requiring you to submit such information when you apply. Unfortunately, what GINA does not seem to protect against is denial of coverage based on publicly known information. Since Carlson’s complement deficiency was known to past insurance companies, it’s probably fair game. To the legislatures who crafted GINA, this must seem like a fairly large exception to their law. A woman who has the genetic markers for a disease is protected, but a woman with the actual genetic disease is screwed. Doesn’t make much sense.
It throws into question whether GINA will have any teeth at all. Widespread genetic discrimination based on cheap, effective, and possibly unconsensual genome sequencing was the specter that frightened the government into forging the genetic anti-discrimination law. We’d all watched GATTACA one too many times. Those in favor of the bill acted as if it solved such problems in a single act. However, I wonder about the efficacy of a bill that only protects you while your information is a secret. Obituaries, publicly discussed conditions (the so called “water cooler” exemption) and declared explanations for the Family Leave Act – these are all fair game. How secret can we keep our genetic code?
The costs of genetic sequencing are dropping rapidly. Complete Genomics is going to sequence a million genomes by the end of 2014. What will they cost by that time? $500? Give it another decade and such sequences may cost pennies. Our genetic information will provide unprecedented chances for improved medical treatment, so we’re going to want it. Yet, considering Terri Carlson’s fate, we’ll have to guard that information desperately.
That’s a disastrous scenario. Parents will worry about whether sequencing their children’s genomes will be a blessing or a curse. Patients will fear donating to biobanks, even with their security precautions, and research will slow. People will feel pressure to not take advantage of genetic science because they can’t afford the consequences of letting someone else know of a genetic condition.
The problem with not protecting publicized information is that all information is becoming public. It’s my belief that privacy is dying, or rather, that it is going through a metamorphosis whose outcome is unpredictable. An insurance company can already look at your father’s obituary after a heart attack and deny you coverage because you likely have a genetic disposition to heart disease. That’s public genetic information at its most basic level, and it’s unprotected. What will GINA protect against when DNA is tied into our identification cards, or when genomes are used as pass codes, or when Facebook has a “look for friends with your genetic markers” App?
Terri Carlson isn’t remarkable for her inability to get health insurance due to genetic disease. She’s remarkable because she’s taken a unique and public route to finding a solution. Neither complement deficiency nor insurance woes seem to keep Terri Carlson down. She’s definitely in good cheer in her videos. Though I do have to say, with all due respect, that her cutesy description of what she’s looking for in a man (1:28) gives me the heebie jeebies. I hope the future isn’t full of people desperately seeking healthcare husbands, but it could be if GINA isn’t fixed. Genetic discrimination isn’t just about information, it’s also about the consequences of that information.
[photo and video credit: Terri Carlson]