GINA’s sixth birthday: Does legislation protecting our genetic information mean anything?

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The Genetic Nondiscrimination Act (GINA) is the federal legislation that protects U.S. citizens from having their genomes accessed and used by employers and health insurance companies. The latest version of law was passed in 2008 and signed into law by President George W. Bush. GINA does not prevent the use of genetic information by life insurance companies or long-term care insurance.

Long before Obamacare outlawed the exclusion of people with preexisting medical conditions by private insurance companies, Congress almost unanimously agreed (95-0 in the Senate and 414-16-1 in the House) that genetic propensities towards these same medical conditions should be kept from insurers. Why? Science writer Ronald Bailey thought it may be because lawmakers feared the market itself might collapse:

The idea of insurance is that people pool premiums together in order to cover unknown risks. What happens when individual risks are no longer unknown? Perhaps. People who find that their genetic tests indicate that they have a much higher risk of a particularly debilitating illness, say Alzheimer’s disease, might load up with gold-plated insurance. As more and more high-risk people buy insurance, insurers would have to raise their rates in order to pay for their medical care. Higher rates would then discourage relatively healthy people from buying insurance which then means insurers would have to raise their rates further and so forth until bankruptcy.

With the insurance mandate of the Affordable Care Act of 2010, the specter of a health insurance market collapse is significantly less of a worry, whether or not people’s genetic information could be included.

Longterm care insurance and life insurance are a bit of a different matter. Although insurers are reportedly not using that information at the moment, they will be. These insurances remain a completely private market, and policy holders usually buy in for decades. They also purchase the policies to use at the end of their lives. And age is, after all, the biggest factor for a lot of diseases.

Companies offering these services may charge people with risky alleles higher premiums or deny them coverage. However, they could also charge higher premiums to people who don’t get genotyped because they have unknown risk.

But, as Bailey points out, medical and technological developments are going to make our genes less important:

Fei Yu, an actuarial researcher at Heriot-Watt University in Scotland, argues that advances in healthcare and the general trend toward mortality improvement will overwhelm genetic risks. In other words, our genes will exercise less and less power over our health destinies as our medical knowledge and technologies are perfected.

Not many cases have been filed under GINA. Cases against Nestle, Oklahoma-based fabric distributor Fabricut and New York nursing home company Founders Pavilion were all settled. Interestingly the cases didn’t directly involve genetic information. Both were filed on behalf of employees who were asked about their family medical history during an employer-required medical exam. Family medical history has been interpreted as falling under GINA.

It will be interesting to see a case come before the courts involving specific genomic data and to see how late-life insurance markets are altered to accommodate the data’s growing pervasiveness.

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