Most teenagers don't sit around contemplating the need for genetic testing. They may not even know the purpose of genetic testing. That all changed for me when I was 13, shortly after my baby brother celebrated his first birthday. He was diagnosed with a disease called Spinal Muscular Atrophy (SMA), a genetic motor neuron disease that affects the muscles that control crawling, walking, head and neck control, and swallowing. In order to inherit SMA, both parents of a child have to be carriers of a mutated SMN1 gene. If both parents are carriers, their child has a one in four chance of being affected with SMA. While my sister and I are perfectly healthy, there is a chance that we could both be carriers of the mutated SMN1 gene. My brother's doctors have strongly advised that, should we choose to have children, our partners should at least be tested to see if they are carriers for the gene. It was the first time the concept of genetic testing came across my radar, but it certainly wouldn't be the last.
[ " ... Unfortunately, as a result of the gene patents, there is only one lab that can do the testing and the tests cost too much. What does it mean when a gene is patented, exactly? It means that a genetic sequence that occurs naturally in the human body is essentially controlled by a private company... ]