This is one of those days when it feels like you’ve slid into some cheesy sci-fi flick on the late, late movie channel. I’m waiting for GINA to happen. For some people, “ignorance is bliss”. It’s easier to be somewhat fatalistic and decide that one’s fate is in divine hands. Que será será. (Whatever will be, will be.) However, many people would like to have some idea of what’s lurking around the corner, even if it’s only the possibility.
The possibility of what? And why are people waiting for GINA?
GINA is the Genetic Information Nondiscrimination Act. It is designed to prevent people from being discriminated against due to their genetic composition. Some people avoid getting tested because they are worried that they won’t be able to get insurance if they have been documented as having a “pre-existing condition” or are in an increased risk category. Others worry that having documented genetic anomalies would prevent them from being hired, or be used as excuses for discrimination by employers.
Some commerce industry groups fear that passing the legislation will result in frivolous lawsuits, or create an undo burden of paperwork. It’s argued that genetic tests are new things, and it’s not necessary to create legislation until we have a need for it (the “solution in search of a problem” argument).
New York Congresswoman Louise Slaughter gives these examples:
Many examples of genetic discrimination already exist. A few years ago a woman in North Carolina was fired after a genetic test had revealed her risk for a lung disorder. Let me give you some more examples of genetic discrimination going on across the country:
*In the 1970s, many African-Americans were denied jobs and insurance based on their carrier status for sickle cell anemia, despite the fact that a carrier lacked the two copies of a mutation necessary to get sick.
*In 1998, Lawrence Livermore Laboratories in Berkeley was found to have been performing tests for syphilis, pregnancy, and sickle cell on employees without their knowledge or consent for years.
*In 2000, the Burlington Northern Santa Fe Railroad performed genetic tests on employees without their knowledge or consent.
In her re-introduction of the Bill, she noted,
Fears about privacy do not just resonate with the public. Health care professionals are also hesitant to make their genetic information available. In one survey of genetic counselors, 108 out of 159 indicated that they would not submit charges for a genetic test to their insurance companies primarily because of the fear of discrimination. Twenty-five percent responded that they would use an alias to obtain a genetic test so as to reduce the risk of discrimination and maximize confidentiality. And, 60 percent indicated they would not share the information with a colleague, because of the need for privacy and fear of job discrimination.
The thing is, a person cannot help their genes. People should not be discriminated against for something they have absolutely no control over. Meanwhile, genetic testing is becoming more common as medical research gets better at pinning down the particulars of causal factors. Parents (and their attending pædiatricians) want to know if they carry an allele for a heritable condition that their newborn child should be tested for, without facing hassles, higher premiums, or potential denial of medical insurance coverage. Nor should anyone have to worry about whether or not being in genetic studies will boomerang and the results later come back to haunt them. What’s the point of having completed the Human Genome Project if people are not able to benefit from the research?
Genetics isn’t an absolute. There are many more diseases like heart disease or diabetes which are multifactorial and can be caused by interactions between genetics and environment (lifestyle). What if you have a history of breast cancer in your family and want to find out if you carry a mutation in the BRCA1 or BRCA2 genes that would predispose you? Medical insurance companies, like other kinds of insurance companies run on expectancies and risk factors. Having any multifactorial disease genes puts you at increased risk, and thus make you more of a potential liability as far as “managing costs” goes (“managed health care” is all about managing costs). Then again, we can just as easily argue that knowledge is power, and that knowing one’s increased risks can help us make better choices and plans about how we live our lives.
In theory, the Americans with Disabilities Act (the ADA, roughly analogous to the Disability Discrimination Act in the UK) gives some protection, but it’s not been legally tested for such, and as we all know, just because something makes sense doesn’t make it true. Legal protections in the US are a motley hodgepodge of state and federal laws, further complicated by lack of a comprehensive and consistent social health system that results from the numbers of health insurance companies, state health care assistance, and the federal health care assistance policies (Medicare and Medicaid which in large part are limited for citizen use as nearly a last-resort resource or use by retirees, the disabled etc). There are also individual state laws regarding genetic discrimination in the workplace or by insurance companies. The Health Insurance Portability and Accountability Act (HIPAA) prevents genetic discrimination for people covered on group insurance plans, but not those on individual insurance plans. (Are you confused yet? I had to go and look up a bunch of details – even people who work in doctors’ offices processing health insurance claims spend an inordinate amount of time looking things up.)
This is a “House Bill”; it has thus far been passed (420 to 3) by the House of Representatives in April of this year, and must next be passed by the Senate, and also signed by the president. But what’s mindboggling is that this isn’t the first time such a bill has been brought to consideration. Various forms were introduced in 1995, 1996, 2003 and 2005, and were not passed.
Life is full of contradictions. On one hand, we have the State of Delaware requiring that an entire group of people (autistics under legal majority) must be registered, despite the fact that autism is neither contagious nor even a disease, and likely polygenic in origin. And with the recent Patriot Act, various civil rights issues in the US have been diminished in favour of “national security”. On the other hand, we have GINA.
Meanwhile, I’m waiting.
“Morality cannot be legislated, but behavior can be regulated. Judicial decrees may not change the heart, but they can restrict the heartless.”
~ Martin Luther King Jr