Bioethics Forum Essay
Is GINA Unjust?
The Genetic Information Nondiscrimination Act (GINA) of 2008 is widely regarded by 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future of health insurance in America in question, the prospect that GINA or the Affordable Care Act might one day be repealed gives me a serious case of the fantods.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 nongenetic 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.
Robert Resta is a genetic counselor in Seattle. This essay originally appeared on The DNA Exchange.
As you rightly point out, one absurdity of GINA is the detection of the same piece of biology (= information) by different means (analysis of nucleus acid sequence vs protein sequence) is treated differently.
Here are two more:
2- Genetic Information includes family history with reference to any test of any form. So if you said, “my mom had type 2 diabetes and I have elevated triglycerides, your “genetic” disposition to diabetes would be protected information.
2- Genetic Test includes detection of somatic, as well as germ-line, hereditable mutations. Hence, if I do a breast cancer biopsy and by histology I see aberrant cells by histology, your likely development of breast cancer is not protected information. But if I then do a test for HER2 status, and pick up a somatic mutation in some of the cells, it become protected information.
The biggest advocate for the legislation going back the 1990’s was FrancisCollins. Who at the time was running the NIH genome center. I had discussions with Francis at the time pointing all of this out (as I expect Tom Murray did as well). His potion was, “I know Steve that this is largely symbolic. But I am afraid that concerns about genetics will get in the way of genetic/genomic research. So, let’s not be purist.”
PS: I was on Clinton’s NBAC with Tom Murray and then was on the Board of Trustees of the Hastings for about a decade
Thanks, Steve. It really is complicated, both ethically and medically. No doubt GINA does lots of good that I am grateful for, but it does have its downsides too. Then too of course there is the increasingly thorny issue of what conditions are considered genetic. The Mendelian stuff is easy but then there’s diabetes, MS, cancer (in general), etc., in which genetics plays at least some role.
GINA is subject to many criticisms, but increasing the health insurance rates of people with non-genetic disorders to subsidize the increased risk of people with genetic conditions is not one of them. GINA only applies to individuals who are asymptomatic. In 2008, when GINA was enacted, once a condition manifested, a health insurer could cancel or raise the rates of an individual’s policy in accordance with state health insurance laws. Therefore, GINA did not increase costs for health insurers, which explains why it passed Congress with only one no vote. This major limitation of GINA also explains why the ACA – not GINA — is the most important genetic nondiscrimination law ever enacted in the US, because it prohibits any medical underwriting of health insurance before or after a condition has manifested.
Mark A. Rothstein
While I recognize that GINA is intended to protect unaffected people, it is surprising to me that an insurer can change rates once they manifest symptoms. As far as I understand it, an insurer can’t change rates for the policy mid-stream, but once the policy is up for renewal, then insurers could up the rates (presumably for individual polices, perhaps less likely for group policies??). Or am I misunderstanding that point? And is this also true for anybody who has health insurance, regardless of their genetic status?