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[Dr. Bruce Buehler/ UNMC Geneticist] "This is the medical atomic bomb. It could be a wonderful discovery, could really add to our quality and length of our life, but it could explode." A single tube of your blood can be tested for four hundred genes. That information can help you make important lifestyle and family choices. The results can also have frightening consequences. [Buehler] "I think molecular genetics has probably raised the largest ethical issue that we've ever faced, that is, we can essentially predict the future for you." Jane Rapp and her sister Sara Trumbull have both had breast cancer. Jane was diagnosed first and had a mastectomy in 1996. Sara had a lumpectomy two years later. There's no family history of cancer in their family. No known reason why these two sisters both got cancer. And because there's a third sister, still cancer-free, Jane and Sara wanted to know. why us? [Jane Rapp/ Received Breast Cancer Test] "I think it was important for both of us. It was important for our other sister, and there are daughters and granddaughters involved." So Jane had a genetic test to see if she carries the gene that causes breast cancer. A positive test would alert younger sister Anne to her own risk of breast cancer. [Sarah Trumbull/ Received Breast Cancer Test] "She's the younger of the three, whether she'd have the mammograms more often, taking the drug Tamoxifen, which both of us are taking, she at least would have had some options." The results of a genetic test are not confidential. You're insurance company can get them. Some might deny coverage based on your results. Thirty-four states have passed laws to protect test results. A bill now in the Nebraska Legislature would limit access to your genetic information. Omaha Senator Pam Brown sponsors the bill. [Sen. Pam Brown/ Omaha] "When people have within their families terrible diseases, and they are facing needing to find out for themselves what the likelihood is that they might have it, to compound that with the fear of losing other things in their life (their job, their insurance) makes it almost unbearable. If this bill passes, insurance companies couldn't require genetic testing as a condition for coverage. Employers couldn't require testing for employees or job candidates. Similar legislation is pending in Congress. [Brown] "We have to protect the individual so that if they want that test, because it is your right, then it should also be your information to be used as you wish." Jane knew her test results could affect her insurance. [Jane] "That was minor compared to knowing what the results might be." Jane's test was negative, but by then she had already made the tough choices. A mastectomy, and a hysterectomy, just as a precaution. The best results wouldn't change her diagnosis, or decisions. [Jane] "Before we ever release a test, can we help someone with
that test and will that test lead to an improved quality of life? It always
has to be a quality of life issue. If all we're saying is you have all
of these bad things and there's nothing you do about changing your lifestyle
will ever change it, I'm not sure that test is useful to anybody."
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