Why treating genetic information separately is a bad idea.

Let us assume for a minute that genetic information is unique. Ought we to regulate it separately and protect it separately from other medical information? I think the answer is, no. It is impossible to do so for two practical reasons. First, it is impossible to develop a working definition for what genetic information is. We have tried. There have been two problems. The first proposed definition is too narrow and the second is too broad. Let me explain. If you define genetic information as the results of a DNA based test, as we did in Texas last year when we enacted legislation purporting to prohibit discrimination in employment and insurance,1 you are leaving out a tremendous amount of information that is not derived from a genetic test. For example, if, in my medical record, there is a notation that my father died of Huntington's disease, that would mean that I have a fifty percent risk of developing this invariably fatal disorder.2 Someone using that information does not need a genetic test result. If we protect people who have a positive test for the Huntington's disease mutation and do not protect me, with only the medical record, that seems illogical. That is the problem with a narrow definition. On the other hand, we have also attempted to use the broadest possible definition and include within genetic information all information derived from an individual or an individual's family members, in addition to the results of genetic tests. This would include, basically, everything. We are now discovering genetic components in the most common multi-factorial disorders: heart disease, cancer, osteoporosis, epilepsy, diabetes, and the list goes on.3 If we included predisposition to any of those within the ambit of genetic information, and then took certain actions, such as prohibiting employers from getting access to "genetic information," in many instances employers that have employees doing very dangerous jobs would not have the information necessary to select workers appropriately. I think if we ever could separate genetic from non-genetic medical information, that day has long since passed, and everything that we discover in the future is going to make the distinction even more difficult. The second practical reason why I think it is impossible to regulate genetic information separately is that it would be economically infeasible, if not totally impossible, to separate genetic information from other information in medical records. Presumably, certain information from medical records would be disclosed, while other information would not. Those in the health care industry tell me that making such distinctions and separating information, when it is debatable whether numerous conditions are subject to disclosure, would be a logistical nightmare. These problems, nonetheless, have not stopped our state legislatures and Congress from charging ahead with a series of laws that attempt to protect against genetic discrimination, mostly in the areas of health insurance and employment.4 So far, nearly thirty states have enacted laws prohibiting genetic discrimination in health insurance and over twenty states have enacted laws prohibiting genetic discrimination in employment.5 Similar proposals are pending in Congress.6 In my view, the laws that have been enacted, and all of the proposals, are illogical and, where enacted, have been ineffective.7 Let me explain why I think this is true. First, the laws draw distinctions between genetic disorders and other disorders for no logical reason. For example, we have, in the last five years, identified genetic mutations that increase the risk of breast cancer.8 In a jurisdiction with a statute prohibiting discrimination in the issuance of an individual health insurance policy on the basis of a genetic test result, a woman who was asymptomatic, but had one of the breast cancer gene mutations, could not be denied access to health insurance, nor charged a higher rate. …