Genetic privacy rights

Genetic discrimination is on its way to being outlawed.

The U.S. House of Representatives ended last week with a critical vote that acknowledged the growing prevalence of genetic testing. The measure, which was nearly unanimously passed in both the House and Senate, would prohibit employers and health care providers from discriminating based on genetic test results. There is an expanding world of genetic tests becoming available, and this legislation will allow these tests to realize their full potential.

The first bill banning genetic discrimination was introduced 13 years ago, and it’s only too bad that the bill wasn’t passed sooner.

There are currently more than 1,000 genetic tests available, and although the results rarely provide absolute clarity, they are, and will continue to be, a valuable tool in health care. There haven’t been any highly publicized instances of genetic discrimination; it’s always been a hypothetical worst-case scenario, but that specter has dissuaded some individuals from pursuing genetic tests.

Our understanding of the human genome has increased substantially over the past couple decades and so has public paranoia and distrust of genetic tests. The fears, doubts and questions are justifiable. Should we test ourselves to see if we are likely to develop a certain disease? Should our health insurance companies and employers be privy to our genetic flaws? Ethical questions still abound, but this legislation should slam the door on nosy outsiders; genetic test results will be the sole property of the individual. This distinction is essential, and it is certainly a win for personal privacy over the interests of third parties who would benefit from such information.

We still have a lot to learn about the role genes play in defining our health, but the value of these tests will continue to increase. This legislation is a good move, and at least for now, our genetic information is still private.