Genetic Info Law: A Civil Rights Victory?

Last week, President Bush signed into law the Genetic Information Nondiscrimination Act (GINA), which will protect individuals from employer and insurance discrimination based on the results of high-tech gene tests. Fighting discrimination is a good idea, but the lack of opposition to GINA points to some potentially serious problems.

GINA passed the Senate unanimously and the House by a margin of 414-to-1, with Ron Paul (R-Texas) the lone dissenter. Democratic Senator Edward Kennedy of Massachusetts, currently battling a brain tumor, hailed GINA as the “first civil rights bill of the new century of life sciences,” and the trade association for health insurance providers testified in support. By all accounts, GINA must be a great piece of legislation, but some nagging problems don’t bode well for the future.

Since GINA prevents insurers from discriminating on the basis of known risk, premiums will go up for everyone, and healthy people may opt out of the insurance system, leaving only those who will cost more to insure. This could cause America’s health insurance system to crash financially, yet the major health insurance companies don’t seem concerned. Perhaps that’s because a large majority of people receive their health insurance through their employers, and thus never really examine or directly see the entire cost of their care, making them less likely to opt out.

Personal Health Information

Such a situation is disturbing because it means that the health insurance system is not responsive to the very people it purports to serve. Think about it: There is a reason there are no cute ads for healthcare featuring a gecko. Of course, unresponsiveness and inefficiency in the healthcare marketplace are not new, but they are the issues that tech firms like Google and Microsoft are beginning to address with their products, Google Health and HealthVault, that enhance consumer control and access to personal health information.

Once health data becomes more prevalent, people may begin asking why it’s OK to charge higher premiums based on age but not OK to charge higher premiums based on genetics. This is an interesting question because it forces one to think about situations where discrimination is considered permissible.

Most people understand and agree with the idea of greater cost for greater risk, so why are genetics any different? Presumably, it is because genetics are closely associated with race, and as a society we have decided, with just cause, that racial discrimination is not tolerable. However, are genetic flaws more like race or more like old age? As it becomes possible to fix and prevent problems based on genetic testing, old age may be the answer. This means that at some point in the future, GINA will cease to be seen as civil rights legislation and instead look more like economic regulation in need of fixing.

Not Yet Fully Understood

For now, however, popular thinking lines up with the sentiment of GINA’s sponsor, Rep. Louise Slaughter (D-N.Y.), when she says, “since no one is born with perfect genes, we are all potential victims of genetic discrimination.” She’s right that everyone has genetic weaknesses of some sort, but a predisposition for warts is a lot less harmful than one toward breast cancer, so we are not all exactly in the same camp even though GINA puts us there.

Whenever Congress agrees so completely, it usually means that the bill has little or no effect. With GINA, it seems to mean that the legislation has yet to be fully understood. Genetic testing on a mass scale is made possible by great advances in technology that will only become more targeted with time. More information is the good news; the bad news is that we may be rushing too quickly to outlaw some of its economic uses.

Sonia Arrison, a TechNewsWorld columnist, is senior fellow in technology studies at the California-based Pacific Research Institute.

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