New Law Should Protect Those Who Want Genetic Tests – Will It?

  • Many people would like to have genetic testing done. Whether their family history includes breast cancer, Parkinson's disease, early on-set Alzheimer's disease or any of a number of other illnesses that may have genetic roots, it can often be good to know if you are, or are not, at risk.


    For some diseases, such as breast cancer, there are active steps you can take to lower your risk. For diseases such as Parkinson's and Alzheimer's, other than healthy living and a great diet with lots of antioxidants and good exercise, there isn't a lot you can do, that we know at this time, to prevent the disease. However, time to plan ahead for what could be a problematic illness in your future can help many people lead a more relaxed life. Also, they will likely stay more aware of advances in medicine that could help them avoid the disease altogether.

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    The glitch (other than cost)?  Discrimination. Will your health insurance go up or will you even be denied coverage if your medical records show your risk? Will a potential employer find out your risk and not hire you?


    Recently, a bill was passed called the Genetic Information Nondiscrimination Act

    (GINA) which, in theory, will protect you from discrimination. How effective will this be? Time will tell.


    I know that employers can't discriminate because of age, but we know it still happens all the time. There are always reasons not to hire people, if you don't want to hire them. Potential employers don't have to give a reason that will get them into legal trouble.


    As far as health insurance goes, it may be trickier for them to discriminate, but if they search your medical records close enough, they may find another reason to deny coverage.


    I'm sounding cynical and I don't want to be. I want to believe this act will protect those who want testing. But, I'm a realist. People need to weigh their options. Some may want to wait until a few lawsuits have been filed by those who dove in and then found that they were having problems getting hired or getting insurance.


    Hopefully, the insurance problem will take care of itself, if we get our broken health care system fixed so that people can be covered no matter what pre-existing illness they have or what genetic link they share with a relative's disease. But we aren't there yet.


    People will have to make their own decisions, based on where they are in their lives and the importance they personally place on knowing if they carry a certain gene. Let us hope that our new law does what it is meant to do - protect those who choose to be tested.


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Published On: June 27, 2008