What if you went to get your genome sequenced and found out months later that you had contained the genes for a deadly disease? What would you do? How would you plan going forward? That is exactly what happened to Dana Atkinson who gave consent to have her DNA sequenced. She is a 38 year old nurse from Susquehanna River and she opted to participate in one of the most ambitious clinical genome sequencing efforts to date. A few months after having her blood drawn, she got a call and was told that she carried a rare mutation linked to long QT syndrome
. Long QT syndrome is a heart rhythm disorder that causes the electrical activity in your body to suddenly go crazy that could result in seizures or even death. The next step Dana did, as anyone would from hearing this news, was she went to a genetic counselor to plan for the future. She was told that although she did carry the gene, she didn't necessarily express the syndromes, and may never express them. The clinical research was being done by the My Code Community Health Initiative
and they have sequence more than 92,500 people, while also having 166,000 people enrolled and waiting to be sequenced. Their goal is to enroll half a million of its patients into the initiative, and use the data for research.
I think that genomic sequencing is important to research and study. It can give us insight into new ideas against fighting viruses and diseases, and can prevent diseases in some cases as well. I think that the more people that have their DNA sequence the better, because better analysis and comparison can been done with more data. The problem is who holds onto this data and the DNA sequences. It could ultimately be used against you, whether in healthcare such as a insurer refusing coverage to certain people containing certain genomes with diseases linked, or if it is used against a group or race of people with the claim of them being inferior because they carry a genetic disease, which may or may not be present at the time. I think it is a very difficult topic that will need much consideration going forward.
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