American Civil Liberties Union

This is day two of our blog series on The Fight To Take Back Our Genes featuring voices...

Tuesday is National DNA Day, which commemorates the discovery of DNA's double helix structure by James Watson and Francis Crick in 1953, as well as the successful completion of the Human Genome Project in 2003. In honor of National DNA Day, the National Human Genome Research Institute will be hosting an online chat from 8 am to 5 pm Eastern today, in which experts will answer questions about DNA in real time.

Today, a divided appellate court upheld patents on two human genes associated with hereditary breast and ovarian cancer. The ruling partially reverses a landmark decision by a federal district court in March 2010 that concluded that human genes cannot be patented. The appellate court did affirm the district court’s invalidation of several claims on methods for comparing two genetic sequences.

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.