The Genetic Information Non-Discrimination Act (GINA) of 2008 is widely regarded by the the genetics community as a critical piece of legislation. GINA provides safeguards against using genetic information to discriminate against healthy people when they apply for health insurance and employment. In what seems like a legislative fantasy from the perspective of today’s polarized American political climate, GINA passed by a vote 95-0 in the Senate, 414-1 in the House of Representatives (Ron Paul of Texas being the lone dissenter), and signed into law by President George W. Bush. It doesn’t get any more bipartisan than that.
I don’t know if anyone has ever studied the impact of GINA on utilization of genetic counseling and testing but my clinical experience, and I suspect that of many of my colleagues, is that discussion of GINA is a component of many genetic counseling sessions. The protections of GINA play a key role in the decision of many of my healthy patients to decide to undergo genetic testing (although Americans have divergent views about health insurance, they have broad feelings of mistrust of health insurers). I am pretty sure that support of GINA among genetics community is as unanimous as it was among the 2008 Congress. Unanimous, that is, except for me. Well, kind of.
Now hear me out before you consign me to Tweet Hell (which, if Dante were to write the Inferno today, he would include it as a 10th circle of Hell, below the 9th Circle of Treachery’s frozen lake where Judas Iscariot resides for sub-zero eternity). I have not sold our genetic savior for a sack of silver and I am not opposed to protecting people from discrimination in insurance and employment. With the future of health insurance in America in question, the prospect that GINA or the Afforable Care Act might one day be repealed gives me a serious case of the fantods. My criticism is that GINA is unfair to people who might suffer discrimination in health insurance for non-genetic reasons.
GINA is an example of genetic exceptionalism, the term coined in 1997 by the widely respected bioethicist Thomas Murray to describe the belief that “genetic information is sufficiently different from other kinds of health-related information that it deserves special protection or other exceptional measures.” Genetic exceptionalism has implications for other aspects of genetic medicine in addition to health insurance protection, as my DNA Exchange colleague Allie Janson-Hazell discussed some 8 years ago. Genetic exceptionalism has generated a quarter century of unresolved debate, with supporters waving it as a banner and critics using it as sword to attack the other side. Like Murray, I am critiquing GINA from the perspective of distributive justice – the just distribution of goods and resources.
The starting point of my argument is that, in the absence of compelling reasons otherwise, everyone should have equal access to affordable health insurance. From that perspective, GINA gives the appearance of being a good thing because it helps produce a more equitable distribution of medical insurance among healthy people who have a family history of a genetic condition or who carry a pathogenic mutation. But this is where genetic exceptionalism rears its head. What is it about genetic information that is so special that it requires its own piece of protective federal legislation? There are many other bits of health information of equal or greater import in predicting future health. My own hemoglobin A1C and fasting glucose levels for one, which are in the “prediabetic range” (though I could be “cured” simply by moving north a hundred miles to Canada, where the cut-off for an elevated A1C is higher than in the US). A perverse effect of GINA is that – should the Affordable Care Act be repealed – my A1C levels could be used against me in applying for health insurance but I would be protected from that same discrimination by GINA if a polygenic risk score, a more uncertain predictor of diabetes than A1C or fasting glucose levels, indicated I had an increased chance of developing Type 2 diabetes.The same could be said for lipid levels, blood pressure, Protein C levels, HPV status, and any of a number of other data points that are uncovered when doctors start probing around in the fluids and bodies of healthy patients.
The net effect of GINA when it passed, and could happen again if the Affordable Care Act is repealed, is an unfair distribution of health insurance such that healthy people who have non-genetic risk factors are not afforded equal protection. And, to pack the wound with some salt, this “non-genetic” risk pool could wind up paying higher insurance premiums that result from greater costs incurred by insurers for covering protected people with genetic risk factors who eventually develop breast cancer as the result of a BRCA pathogenic variant or Huntington disease due to an HTT pathogenic variant.
So GINA falls short in the bigger picture of distributive justice. By privileging genetic information, arguing that it is somehow more important than other medical information, GINA results in economic and health care inequities. The unintended implicit territorial message of the genetics community’s praise of GINA is “Hey man, our patients are protected and that makes GINA a good thing.” But the good that GINA achieves can lead us to ignore its downsides. As I have argued before, our sense of Do-Goodism can create significant blind spots. It is difficult to defend a law as being just if it privileges one group of people at the cost of harming or excluding another group of people for what appear to be arbitrary reasons. GINA is a symptom of America’s ailing health system, not a cure.
Thanks again to Emily Singh for her graphics work.
4 responses to “Is GINA Unjust?”
About equivalent to arguing in 1870 that we shouldn’t have fought for the African American right to vote because women didn’t have the right to vote either (until 1920) because it wasn’t good enough because it didn’t make everyone equal. Frankly, things happen in small steps and I don’t see any problem with taking those small steps. I also don’t see any party arguing that GINA should be overturned and they aren’t getting anywhere very quickly on repealing ACA at the moment. I’d be more concerned about the new legislation being proposed that would change the patent laws making it legal to patent naturally occurring DNA again. You pick your battles and often the battles start with a smaller step to get where you want to go. If you think it should be a right for affordable health care in the US, then maybe that needs to be proposed as a constitutional amendment like the previous examples I stated. As of right now it is not.
Good point about the comparison to the 15th Amendment and the voting rights of African Americans. I love comments that force me to carefully think through my positions, although I might, might argue there are some ethical and historical distinctions between GINA and the right to vote. There were also bitter fights among suffragettes as to whether they should support the 15th Amendment. That being said, I am not opposed to GINA, as I stated in my posting. All laws and constitutional amendments have downsides; we just have to decide if the upsides outweigh the downsides and think of ways to rectify the downsides. My greater concern is the downsides to GINA that are largely being ignored by the genetics community in any vocal way. Virtually everything I have ever read about GINA by geneticists has been nearly entirely about the upsides, with very little discussion about the downsides or how to manage them. And yes, small steps can be important in ultimately bringing about big change, but when GINA was finally passed after 10-15 years of trying, most of the efforts to support it were not in the context of “this is the first step toward ensuring health care coverage for all” but rather it was usually presented as “genetic conditions are special and therefore need special protection.” ACA may not be repealed, but it has been significantly weakened. Depending on how the next presidential and congressional elections play out, it’s future could very much be in question.
Thank you for being a thoughtful critic.
Nice Article, Thanks for Sharing.
Nice Article, Thanks for Sharing.