Saturday, August 18, 2007

Genetic Discrimination

This story about how the US military practices genetic discrimination hits really close to home. Almost exactly a year ago, when I was about to go back to work after a period of disability, my health suddenly turned south in a really bad way. I went to a series of doctors, treating the symptoms, but we had no idea why someone as young as me should have these ailments. One doctor suggested a genetic test; it was a long shot because this gene is extremely rare in Asians. It was a new test; even my immunologist was not aware that this gene test had become available.

It came back positive. Suddenly, all the seemingly unrelated ailments made sense. I received appropriate care, made lifestyle modifications and my health started to improve. I told my employer my diagnosis and what kind of modifications I needed in order to continue working. My family was briefed on what they needed to do to protect me. I spend an order of magnitude less on medical care than before this genetic test.

It is a double edged sword. Once I am aware of the gene I carry, it becomes a preexisting condition. I won't be able to get life or disability insurance in the future. (It was probably not possible anyway due to my symptoms in the past half dozen years.) I won't be able to get health insurance on my own or with all but the largest employers. Yet many large employers check medical databases before hiring employees so I am unlikely to be hired by anyone. I am grateful that I have a job I like and that they are happy with my job performance.

But imagine losing your job because you have a gene that causes illness or disability. Imagine not just losing your job, but losing access to retiree health benefits that are promised to every soldier. Ill, without a job and health insurance, where do you turn? It is an incredibly shoddy way to treat a fellow human being.

Also read Now Can We Talk About Health Care? by Hilary Clinton. She talks about genetic diseases and discrimination as well.

2 comments:

  1. Food for thought. I know people will rush to say that it could never happen... Who would have thought that wire-tapping in the name of anti-terrorism would be so big? I'm glad to know that this test helped you figure out modifications that make your health and life better.

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  2. That is precisely a problem that DH and I have discussed about the idea of genetic testing. It can be highly beneficial to the individual but there can also be profound repercussions.

    I agree with your points, it is an incredibly shoddy way to treat a human being and the whole system is incredibly flawed. And people cannot control the genes they were born with (or whatever congenital abnormalities - a personal plea here). And yet while we deny healthy people who have a genetic risk, we for the most part do not penalize other people who engage in high risk behavior.

    I also sympathize with the situation, at least as regards health insurance. I cannot get disability or life insurance and luckily do not need either one. The fact that I cannot get them has meant that I have always had to be more careful about planning.

    Because I am fortunate enough to live in New York State I can get health insurance, they have to cover me even when I get rolled off the group plan later this year. This will hopefully help the situation should I ever need to find new employment as well, but would definitely be a problem in another state.

    I worked for an insurance company long long ago. The company I worked for would not insure me. This was before New York passed guaranteed coverage laws. Insurance in NY is expensive because companies are required to cover everyone and they can only raise premiums for an entire class, not an individual. This can be good for some people, but everyone shares the burden in the cost of high premiums. The premiums can be very high for some families although NY does have a reduced premium plan for low income residents. On the other hand I know people in other states who have lost their insurance or faced very high premium increases when their risk to the company went up, increases that made their once affordable plan completely unattainable.

    I think about that sometimes. My DH could move to a lower tax state to save money in his retirement but I pose a problem. We are not sure the savings warrant the potential risks. We both well know how catastrophically expensive medical care can get. It will be years before I am eligible for Medicare and thus truly free to live where I wish. I may never need the insurance, but having been a heavy user of the health care system at times in the past I am not sure I can comfortably take that risk.

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