I think a couple of things are involved in what you're saying. We have the broader issue for the whole system of public health, and then the issues for the individual.
Specifically for the individual, it may mean they will not avail themselves of what would be the best medical care available to them, given their condition. They may not be offered treatment such as something radical like surgery or something very invasive, because it wouldn't be justified without a positive test. They may not be offered the appropriate treatment. As mentioned, when we start to see the pharmacology based on the genetic code of an individual, that will not be available to patients as that becomes more common. They may have a delayed or absent diagnosis. They may never actually get diagnosed with their underlying condition, because they have not had the testing that would show that. By not availing themselves of the best treatment, they may have increased mortality and morbidity, so they may die younger. They may be more ill. There may be other consequences for the health care system in a delayed diagnosis.
I have a colleague who actually has a family history. Her father is from a family of 10 in Prince Edward Island. All 10 developed early-onset dementia: 10 out of 10. The gene has been identified. She is not willing to go into clinical trials. Actually, there are none here, but in the States there are clinical trials for treating patients like her before they develop symptoms. But she's not willing to be tested because of concerns about insurability. It brings up another public health issue of patients not willing to become part of research projects. There is no benefit to her at this point without any proven treatment. There is only the downside of the insurability issue. That's a broader issue of not having people entered in clinical trials because they are not willing to take that risk.
I think I've outlined quite a few of the issues that patients would really would be facing.