New genetics information law undercuts our right to privacy

Justice William O. Douglas once wrote, "The American government is premised on the theory that if the mind of man is to be free, his ideas, his beliefs, his ideology, his philosophy must be placed beyond the reach of government." Unfortunately, like everyone from the founders of this nation to its greatest jurists, Douglas never imagined how much deeper into the most intimate recesses of a person's nature it would someday be possible for the government to reach.

With much fanfare, Congress recently passed the Genetic Information Nondiscrimination Act of 2008, a law that supposedly prevents insurers from using genetic data to establish premiums for a group health plan (but not life insurance). Insurers can, however, use genetic tests to establish payment amounts, whatever that means.

Whether, as most lawmakers believe, the law also prevents employers from using genetic tests in determining employment, or insurers from discriminating against individuals, is not clear and will have to await the inevitable lawsuits that will arise in the next decade.

American law is not written for its citizens to understand; it is written to guarantee employment for lawyers. While employers cannot ask you to take a test, they apparently can deny employment if they happen to learn of your genetic proclivities some other way.

And the law virtually guarantees they will by allowing personal genetic information to be widely shared without the individual's knowledge or consent. It can even be shared over his or her objection. That is because the GINA defines genetic data as health information under the Health Insurance Portability and Accountability Act, a law that was supposed to protect the privacy of electronic health data but in reality does the opposite.

We have, in general, two copies of every gene, although they may not be equally active for a number of reasons. There are, however, many existing forms of each gene. Our genetic nature depends upon which two we happen to have at each gene position on our chromosomes. Close relatives have similar combinations, a fact that lets the police use brothers and daughters to convict felons. Although some diseases are caused by a single gene, our susceptibility to most diseases is due to the interaction of several genes.

Using so-called gene chips and other clever technology it is now possible to determine which copies of each gene we have and thus our tendency toward things like osteoporosis, obesity, cardiovascular disease, schizophrenia and various cancers. The amount of such information will increase rapidly, especially as the government establishes the National DNA Database, which will use heel-stick blood from all newborns regardless of parental knowledge or consent.

Originalist jurists, to justify their religious beliefs, have long denied, despite the Ninth Amendment, that there is any constitutional right to privacy. Congressional incompetence seems now, in practice, to have proven them right. By not protecting our privacy, Congress has ultimately doomed the idea of private insurance or even the idea of insurance itself, which is based upon the sharing of unknown risks. Unless we re-establish a true right to privacy in all things, we will accomplish a profound injustice and lose our most valued and comprehensive right.

Bill Mego's column is published each Thursday. Contact him at bill.mego@sbcglobal.net.