Craig Venter was the first person to ever publish his genome, and while he may have had some worries before exposing his DNA to the world, getting fired was not one of them. Now, the rest of us can relax as well. The Genetic Information Non-Discrimination Act (GINA) has recently been implemented to prevent employers from discriminating based on genetic information. This reform goes a long way towards eliminating this new form of prejudice, but there are gaps and ambiguities in what it protects, and questions about how it will hold up in the future.
First, the basics: GINA passed almost unanimously out of congress and was signed by President Bush in May of 2008. Regulations preventing health insurance discrimination have been phasing in since May of this year. The law applies to all health policies, except those for long term care, and also exempts life insurance, despite the fact that genetic discrimination for life insurance has been banned in both the U.K. and Australia.
Employers also have exemptions. The law does not apply to businesses that employ fewer than 15 employees, and employers can still obtain information on family history that they can glean from obituaries, publicly stated information (the “water cooler” exemption), and leave taken under the Family Medical Leave Act.
Eliminating the fear that genetic information will be used to bar health coverage and employment is good news for commercial testing companies like 23andMe, and for researchers trying to recruit subjects for genetic testing. But while GINA will help to treat people of various genotypes fairly, the effects are more complicated. An employer may already know about your family’s history of early heart disease, but now they cannot act on it. No doubt there are also plenty of lawyers giddy about filing lawsuits that turn on where the boundaries of genetic information are. If your father was an alcoholic, is that genetic information, or just behavioral? Somebody is going to pay a lot of legal fees to find out.
As genetic information becomes more widespread, situations where an employer knows information, perhaps even important information, about their employee, and just has to pretend that they don’t, will become more commonplace. Also potentially problematic, is how this will affect employers making hiring decisions, not on the basis of saving money on health insurance, but for determining the capabilities of their employee. Should the Secret Service really have to look the other way when hiring someone with a genetic predisposition to schizophrenia? Or how about when the bar to employment is partially for the employee’s benefit, such as a mining company that would not want to hire people predisposed to lung problems? These conflicts will only increase in a world with $100 genome tests and DNA Facebook apps.
Going even further forward, it will be interesting to see if this law holds up as genetic modification becomes more commonplace. After all, once negative aspects of your genome become a choice, will people still want to carry around the dead weight (mind the pun) of non-genetically modified people on their insurance policy? I would certainly rather have the option of joining a cheaper insurance plan that includes others who are willing to undergo testing and modification. Although a similar situation could occur today, with people joining in a plan with others who have particular healthy genomes, from a fairness standpoint, it’s just not the same. Once people can change their genome, it would no longer be discrimination based on an accident of nature, but on a personal choice.
This idea can lead to a “slippery slope” argument questioning where discrimination based on modified versus unmodified genomes would end, and in a way, the fight to protect genetic information is the harbinger of other, more serious battles. All of them relate to seeing others, and ourselves, as bundles of information, along with being human. The fights now, and in the future over GINA will be signposts for how we deal with the conflict between those two views of ourselves.
For more information about GINA, you can read this fact sheet from the National Institutes of Health.
[image credits: Wiki Commons, NIH]
